A Fibromyalgia Doctor's Advice for Dealing with the Physical Tasks of Daily Life
by Dr. Mark J Pellegrino, MD*
April 21, 2010
A Fibromyalgia Doctors Advice for Dealing with the Physical Tasks of Daily Life
A specialist in musculoskeletal function and pain (Physiatry), fibromyalgia doctor Mark Pellegrino suggests many “basics” that can help those with FM and other painful conditions to approach daily chores in ways that are kinder to the muscles. An FM patient himself, he knows that ‘every little bit helps.'
_______________
Whoever invented fibromyalgia never had to vacuum!
Chores can be a difficult challenge for someone with fibromyalgia. I always ask my patients if their fibromyalgia interferes with activities in the house and they almost always tell me “yes” (even the men!). The bending, reaching, lifting, and pulling required of these tasks causes increased pain and often leads to painful flare-ups. The fibromyalgia homemaker/maintainer is faced with the dilemma of wanting to have a clean home, but not having the physical abilities to complete these tasks without pain. What can you do?
1. Stop doing housework altogether. Yes, just go on strike! See if the work gets done by others. Watch as nothing gets done and your house becomes a health hazard! You can’t stop everything, but daily or weekly tasks can be analyzed to determine if they can be done less frequently. Consider a rotating system where different parts of the house are cleaned on different days and not all at once. Instead of doing one heavy task in one day, spread it out into several mini-tasks over the course of a week.
Your whole house may not be perfectly clean all the time, but parts of your house are perfect every day!
2. Have someone else do it, with you supervising. This is a good way to teach responsibility to your children (or your spouse, the biggest kid of all). The shared housework concept divides the responsibilities among the entire family, and you do the share of tasks that you can comfortably handle.
The heavier tasks (vacuuming, carrying laundry loads) should be delegated to other family members. You supervise - and be sure to look busy at all times!
3. Pay someone else to do it, if you can afford it. Try to have the paid person come weekly or every other week to do the major cleaning, scrubbing and vacuuming. You can do the minor “touch-up” work in between visits. Bribe your kids to work cheap!
4. Modify the way you are doing particular tasks. This allows you to continue doing the homemaking, but do it in a way that is kinder to your muscles. Since homemaking chores are done with your body in unusual and awkward positions that aggravate your fibromyalgia, proper attention must be paid to "fibronomics."
Four Rules of Fibronomics
1. Arms stay home.
2. Unload the back.
3. Support always welcome.
4. Be naturally shifty.
Thursday, April 22, 2010
Sunday, April 18, 2010
Time for change
I am going to heed my doctors parting words when I saw her this week, she advised me to rest more and play more....
Friday, April 16, 2010
A Sudden Illness - How My Life Changed, by Laura Hillenbrand
A Sudden Illness - How My Life Changed, by Laura Hillenbrand "I returned home, lay down, and tried to figure out what to do. My psychiatrist had found me to be mentally healthy, but my physicians had concluded that if my symptoms and the results of a few conventional tests didn't fit a disease they knew of, my problem had to be psychological. Rather than admit that they didn't know what I had, they made a diagnosis they weren't qualified to make."
I hope recent advances (XMRV & the Canadian SM neurological classification) make this attitude an historical abberration rather thhan the norm as it is now.
I hope recent advances (XMRV & the Canadian SM neurological classification) make this attitude an historical abberration rather thhan the norm as it is now.
ME/CFS Given Official Recognition by Ontario Government
Amazing news!!!!!!
ME/CFS Given Official Recognition by Ontario Government
ME/CFS Given Official Recognition
ME/CFS Given Official Recognition by Ontario Government!
This means that no one in Ontario who suffers from ME/CFS can ever again be told by a doctor that ME/CFS does not exist. If they do, tell them to look up Diagnostic Code 795. 'Chronic Fatigue Syndrome' has been given the
OHIP Diagnostic Code 795 by the Ontario Medical Association as a Neurological Illness!
Ideally, we wanted the Diagnostic Code to read: 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, but we had to take what the Ontario Medical Association approved. The most important fact is that 'Chronic Fatigue Syndrome' is now officially recognized as a Neurological Illness in the Province of Ontario, Canada. Perhaps the other Provincial Ministries of Health in Canada will follow?
It has taken many years to get to this point of lobbying, meetings, etc. With the publication of the Canadian Definition, which was initiated by the National ME/FM Action Network, this made this possible. Over the last several years, The Myalgic Encephalomyelitis Association of Ontario has been in meetings with the Ontario Ministry of Health to lobby for a Diagnostic Code and we are so pleased that we now finally have one. Dr. Alison Bested did a fantastic presentation to the Ontario Medical Association. What does it mean to have a (CFS) code"? It means that:
1. NO physician can ever say again that our illness does not exist;
2. All physicians in Ontario will receive a notice from OHIP of our new CFS Diagnostic Code 795 as a Neurological Ilness;
3. The fact that the Ontario Medical Association gave CFS a Diagnostic Code as a Neurological Illness will cause concern to Insurance companies;
4. It will help individuals applying for Ontario Disability Support Program and the Canada Pension Disability Plan;
5. It now makes it possible to collect Statistics in Ontario; and
6. It will hopefully give incentive to the other provinces to follow.
NOTE: The CFS Diagnostic Code is given to someone who is being diagnosed with CFS for the first time. The code is not a time-based fee code. Follow up appointments for any illness (heart disease, MS, CFS, etc. at the present time is usually billed as Supportive Therapy if you take more time than a normal appointment.
ME/CFS Given Official Recognition by Ontario Government
ME/CFS Given Official Recognition
ME/CFS Given Official Recognition by Ontario Government!
This means that no one in Ontario who suffers from ME/CFS can ever again be told by a doctor that ME/CFS does not exist. If they do, tell them to look up Diagnostic Code 795. 'Chronic Fatigue Syndrome' has been given the
OHIP Diagnostic Code 795 by the Ontario Medical Association as a Neurological Illness!
Ideally, we wanted the Diagnostic Code to read: 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, but we had to take what the Ontario Medical Association approved. The most important fact is that 'Chronic Fatigue Syndrome' is now officially recognized as a Neurological Illness in the Province of Ontario, Canada. Perhaps the other Provincial Ministries of Health in Canada will follow?
It has taken many years to get to this point of lobbying, meetings, etc. With the publication of the Canadian Definition, which was initiated by the National ME/FM Action Network, this made this possible. Over the last several years, The Myalgic Encephalomyelitis Association of Ontario has been in meetings with the Ontario Ministry of Health to lobby for a Diagnostic Code and we are so pleased that we now finally have one. Dr. Alison Bested did a fantastic presentation to the Ontario Medical Association. What does it mean to have a (CFS) code"? It means that:
1. NO physician can ever say again that our illness does not exist;
2. All physicians in Ontario will receive a notice from OHIP of our new CFS Diagnostic Code 795 as a Neurological Ilness;
3. The fact that the Ontario Medical Association gave CFS a Diagnostic Code as a Neurological Illness will cause concern to Insurance companies;
4. It will help individuals applying for Ontario Disability Support Program and the Canada Pension Disability Plan;
5. It now makes it possible to collect Statistics in Ontario; and
6. It will hopefully give incentive to the other provinces to follow.
NOTE: The CFS Diagnostic Code is given to someone who is being diagnosed with CFS for the first time. The code is not a time-based fee code. Follow up appointments for any illness (heart disease, MS, CFS, etc. at the present time is usually billed as Supportive Therapy if you take more time than a normal appointment.
Tuesday, April 13, 2010
Whittemore Peterson Institute – Throwing Down The Gauntlet | CFS Un-Tied Blog
Whittemore Peterson Institute – Throwing Down The Gauntlet | CFS Un-Tied Blog
"Whittemore Peterson Institute – Throwing Down The Gauntlet
The rumor mill surrounding the XMRV pseudo-replication studies can finally be put to rest. Any further speculation regarding the cohort used in the original studies, the methodology used in replication attempts, and the efforts made by the WPI to supply reagents and positive patient samples (which went unused) is pointless. The line in the sand has been drawn.
Once again, we need to support the science. Please take a moment and make whatever donation you can to the WPI Institute. "
I truly hope this gets the required response and the XMRV debate moves forward
"Whittemore Peterson Institute – Throwing Down The Gauntlet
The rumor mill surrounding the XMRV pseudo-replication studies can finally be put to rest. Any further speculation regarding the cohort used in the original studies, the methodology used in replication attempts, and the efforts made by the WPI to supply reagents and positive patient samples (which went unused) is pointless. The line in the sand has been drawn.
Once again, we need to support the science. Please take a moment and make whatever donation you can to the WPI Institute. "
I truly hope this gets the required response and the XMRV debate moves forward
Wednesday, March 17, 2010
Mitochondrial Function Profile - DoctorMyhill
A Doctor's Roadmap for Dealing with the Problems of ME/CFS
by Dr. Sarah Myhill, ME*
March 17, 2010
The seeming triggers and comorbidities of ME/CFS differ from person to person. But until science finds a “silver bullet,” experienced clinicians know that better health depends on following some fundamental rules.
Dr. Sarah Myhill, MD, a UK-based fatigue specialist focused on nutrition and preventive medicine,* lays out these rules, plus a list of interventions and tests that often help with specific symptoms. This information is excerpted with kind permission from an article posted in the “Fatigue” section of Dr. Myhill’s newly redesigned educational website (DrMyhill.co.uk)
Mitochondrial Function Profile - DoctorMyhill
by Dr. Sarah Myhill, ME*
March 17, 2010
The seeming triggers and comorbidities of ME/CFS differ from person to person. But until science finds a “silver bullet,” experienced clinicians know that better health depends on following some fundamental rules.
Dr. Sarah Myhill, MD, a UK-based fatigue specialist focused on nutrition and preventive medicine,* lays out these rules, plus a list of interventions and tests that often help with specific symptoms. This information is excerpted with kind permission from an article posted in the “Fatigue” section of Dr. Myhill’s newly redesigned educational website (DrMyhill.co.uk)
Mitochondrial Function Profile - DoctorMyhill
Wednesday, February 17, 2010
bmj.com Rapid Responses for Santhouse et al., 340 (feb11_1) 738
bmj.com Rapid Responses for Santhouse et al., 340 (feb11_1) 738
Chronic Fatigue Syndrome 15 February 2010
John K Johnson,
Consultant Biochemist
Retired
"The air of defeatism that exists within the medical profession about these
conditions is understandable as there is no known cause, no diagnostic test,
and no satisfactory treatment. There is little dedicated specialist
provision or even recognition of which hospital department should deal with
referrals. No NICE guideline exists for fibromyalgia and there have been few
articles in the BMJ or BMA Learning over the past ten years so research must
be limited. On the other hand, claims for treatment leading to miracle cures
can be found on the internet and in alternative medicine catalogues, all
unsubstantiated by clinical trials.
Perhaps the National Institute for Health and Clinical Excellence can be
persuaded to review this situation and initiate research to show sufferers
that they are not forgotten."
Chronic Fatigue Syndrome 15 February 2010
John K Johnson,
Consultant Biochemist
Retired
"The air of defeatism that exists within the medical profession about these
conditions is understandable as there is no known cause, no diagnostic test,
and no satisfactory treatment. There is little dedicated specialist
provision or even recognition of which hospital department should deal with
referrals. No NICE guideline exists for fibromyalgia and there have been few
articles in the BMJ or BMA Learning over the past ten years so research must
be limited. On the other hand, claims for treatment leading to miracle cures
can be found on the internet and in alternative medicine catalogues, all
unsubstantiated by clinical trials.
Perhaps the National Institute for Health and Clinical Excellence can be
persuaded to review this situation and initiate research to show sufferers
that they are not forgotten."
Monday, February 01, 2010
Monday, January 25, 2010
My update
Just when I think I have come to grips with living with CFS/ fibromyalgia it throws another flanker at me...around Christmas I thought I ad an eye infection but the antibiotic cream soothed a little but did not get rid of the stabbing itchy red eyes, gummy on the morning so back to my own GP who has prescribed fake tears... only a minor thing I know but it makes me feel and look grotty with permanent red glazed eyes.. add on waking with a visual migraine and it adds up to a downer start to the week. I had planned to try little decorating today, in 15 or 20 minute stints but migraleve will have to work miracles before that is possible...aaarrrgghhhhh
Saturday, January 16, 2010
January 2010 : ME Free For All
January 2010 : ME Free For All: "Is M.E. a genuine illness? poll in 'British experts say ME virus is a myth', Daily Mail, 6 January 2010 #10
Sir,
Invest in ME is a UK charity which seeks to educate about Myalgic Encephalomyelitis (ME/CFS).
You have allowed a poll entitled, 'Do you think ME is a genuine illness?' to be set up on your web site at
www.dailymail.co.uk/debate/polls/poll.html
which itself seems to have been initiated following the recent Imperial College research publication concerning the XMRV retrovirus (British experts say ME virus is a myth, Daily Mail, 6 January 2010).
This is a highly offensive action taken by your staff and does you no credit whatsoever. We would like to request that you remove this poll immediately.
There is no reason or sensible motive, apart from sensationalism, to promote such a poll. ME is recognised as a neurological illness by the World Health Organisation and by the UK government. Presumably you would not run such a poll for other illnesses such as cancer, diabetes, MS or Parkinson's?
Should you need to know the real situation with myalgic encephalomyelitis (ME) which exists then you are welcome to contact us. There are so many real issues surrounding the perception of ME by the media and promoted by vested interests in the establishment that it would be better if you were to concentrate on those.
The treatment of ME patients in the UK is a national scandal and your newspaper and its web component would perform a real public service, and perhaps attract more readers, if it exposed the people who seek to perpetuate the myth of ME as a somatoform illness.
Regarding the ICL research this has already been discredited by the Whittemore-Peterson Institute of Nevada (WPI), USA, who carried out the o"
Sir,
Invest in ME is a UK charity which seeks to educate about Myalgic Encephalomyelitis (ME/CFS).
You have allowed a poll entitled, 'Do you think ME is a genuine illness?' to be set up on your web site at
www.dailymail.co.uk/debate/polls/poll.html
which itself seems to have been initiated following the recent Imperial College research publication concerning the XMRV retrovirus (British experts say ME virus is a myth, Daily Mail, 6 January 2010).
This is a highly offensive action taken by your staff and does you no credit whatsoever. We would like to request that you remove this poll immediately.
There is no reason or sensible motive, apart from sensationalism, to promote such a poll. ME is recognised as a neurological illness by the World Health Organisation and by the UK government. Presumably you would not run such a poll for other illnesses such as cancer, diabetes, MS or Parkinson's?
Should you need to know the real situation with myalgic encephalomyelitis (ME) which exists then you are welcome to contact us. There are so many real issues surrounding the perception of ME by the media and promoted by vested interests in the establishment that it would be better if you were to concentrate on those.
The treatment of ME patients in the UK is a national scandal and your newspaper and its web component would perform a real public service, and perhaps attract more readers, if it exposed the people who seek to perpetuate the myth of ME as a somatoform illness.
Regarding the ICL research this has already been discredited by the Whittemore-Peterson Institute of Nevada (WPI), USA, who carried out the o"
January 2010 : ME Free For All
January 2010 : ME Free For All: "As an M.E. sufferer of over three years, I wish to protest most strongly at your promotion of a poll questioning the legitimacy of my illness (Is M.E. real?).
www.dailymail.co.uk/debate/polls/poll.html
M.E. has been listed as a neurological disease by the World Health Organisation since 1969 and, as my diagnosis came from my GP, one would assume she knew what she was talking about and would not diagnose anybody with something that did not exist.
A year ago I lost my disability benefits solely because of the bias and misinformation held as `truths' by some doctors who work for the DWP - this was despite having physical tests results showing massive cell damage going on inside my body and providing irrefutable evidence of the physiological nature of my disease which is responsible for the overwhelming pain and fatigue from which I suffer."
"I have had CFS/ME for more than 14 years. It has destroyed everything - careers, relationships and taken me to the very edge of sanity.
I live a life of isolation, pain and exhaustion. Normal activities are off limits to me.
I have excrutiating pain under all of my skin like barbed wire.
Such has been its ferocity this year that I have seriously contemplated suicide.
That you should visit such a mischief-making poll
www.dailymail.co.uk/debate/polls/poll.html
on people like myself is all the evidence that I need that our society is in trouble.
Your newspaper's disregard for the suffering of others is typical of the tabloid obsession with cheap thrills no matter what the cost.
Walk a mile in my shoes. Quite frankly you couldn't.
Yours faithfully
Adrian Bonds"
www.dailymail.co.uk/debate/polls/poll.html
M.E. has been listed as a neurological disease by the World Health Organisation since 1969 and, as my diagnosis came from my GP, one would assume she knew what she was talking about and would not diagnose anybody with something that did not exist.
A year ago I lost my disability benefits solely because of the bias and misinformation held as `truths' by some doctors who work for the DWP - this was despite having physical tests results showing massive cell damage going on inside my body and providing irrefutable evidence of the physiological nature of my disease which is responsible for the overwhelming pain and fatigue from which I suffer."
"I have had CFS/ME for more than 14 years. It has destroyed everything - careers, relationships and taken me to the very edge of sanity.
I live a life of isolation, pain and exhaustion. Normal activities are off limits to me.
I have excrutiating pain under all of my skin like barbed wire.
Such has been its ferocity this year that I have seriously contemplated suicide.
That you should visit such a mischief-making poll
www.dailymail.co.uk/debate/polls/poll.html
on people like myself is all the evidence that I need that our society is in trouble.
Your newspaper's disregard for the suffering of others is typical of the tabloid obsession with cheap thrills no matter what the cost.
Walk a mile in my shoes. Quite frankly you couldn't.
Yours faithfully
Adrian Bonds"
Daily Mail explain why they pulled their poll on whether ME is a genuine illness
Daily Mail explain why they pulled their poll on whether ME is a genuine illness: "The Daily Mail have apologised for their controversial website poll 'Do you think ME is a genuine illness?'. The poll – originally put up to accompany the paper's coverage of the XMRV debate – was pulled from the website after a huge outcry from many people with ME/CFS and a sustained email campaign from several Facebook pages.
In an email signed by assistant editor Charles Garside, the Daily Mail wrote:
'First of all, let me apologise sincerely for any offence that may have been caused.
'The poll to which you refer was posted by a junior member of staff of Mail Online in response to a story which questioned once again the causes of ME.
'As I am sure you are aware, there is still a great deal to learn about what lies behind the condition. However, I entirely accept that this is completely different from suggesting that the condition itself is not real, regardless of the cause.
'I am pleased to report that once the clumsy nature of the poll was drawn to more senior staff's attention it was immediately removed from the website.
'The Mail - both the paper and online - prides itself on its coverage of medical matters and has devoted much resource over the years into covering the search of the causes and a cure for ME. Rest assured that we will continue to do this and that its sufferers continue to enjoy our full sympathy and support.
'We do appreciate all feedback - whether positive or negative - and I am particularly grateful to you for taking the time and trouble to draw this to our attention.'"
In an email signed by assistant editor Charles Garside, the Daily Mail wrote:
'First of all, let me apologise sincerely for any offence that may have been caused.
'The poll to which you refer was posted by a junior member of staff of Mail Online in response to a story which questioned once again the causes of ME.
'As I am sure you are aware, there is still a great deal to learn about what lies behind the condition. However, I entirely accept that this is completely different from suggesting that the condition itself is not real, regardless of the cause.
'I am pleased to report that once the clumsy nature of the poll was drawn to more senior staff's attention it was immediately removed from the website.
'The Mail - both the paper and online - prides itself on its coverage of medical matters and has devoted much resource over the years into covering the search of the causes and a cure for ME. Rest assured that we will continue to do this and that its sufferers continue to enjoy our full sympathy and support.
'We do appreciate all feedback - whether positive or negative - and I am particularly grateful to you for taking the time and trouble to draw this to our attention.'"
Friday, January 15, 2010
Thursday, January 14, 2010
Feeling fluey
Yet gain I failed miserably to get two quality rests yesterday, in fact I didnt even manage one - what is blocking me?
As a result I was too tired to cook dinner so we both just had a tin of soup, usually try to avoid anything ready made but it was desperate. It was t'other halfs night to dad sit ( dad has severe dementia and P goes round two nights a week to supplement the carers services and try to proovide some quality time for him). I ust about managed to watch Emmerdale but was flat out on the settee when P got home about 8.30. Only woke a few times during the night ( thanks to Nortryptaline) but am still eye-crossingly tired this morning with hot flu like head...guess I really must get those rests in....
As a result I was too tired to cook dinner so we both just had a tin of soup, usually try to avoid anything ready made but it was desperate. It was t'other halfs night to dad sit ( dad has severe dementia and P goes round two nights a week to supplement the carers services and try to proovide some quality time for him). I ust about managed to watch Emmerdale but was flat out on the settee when P got home about 8.30. Only woke a few times during the night ( thanks to Nortryptaline) but am still eye-crossingly tired this morning with hot flu like head...guess I really must get those rests in....
Wednesday, January 13, 2010
CFS & Fibromyalgia Rating Scale | CFIDS & Fibromyalgia Self-Help
CFS & Fibromyalgia Rating Scale | CFIDS & Fibromyalgia Self-Help: &
CFS & Fibromyalgia Rating Scale
100 Fully recovered. Normal activity level with no symptoms.
90 Normal activity level with mild symptoms at times.
80 Near normal activity level with some symptoms.
70 Able to work full time but with difficulty. Mostly mild symptoms.
60 Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
50 Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.
40 Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
30 Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
10 Mostly bedridden. Severe symptoms.
0 Bedridden constantly. Unable to care for self.
CFS & Fibromyalgia Rating Scale
100 Fully recovered. Normal activity level with no symptoms.
90 Normal activity level with mild symptoms at times.
80 Near normal activity level with some symptoms.
70 Able to work full time but with difficulty. Mostly mild symptoms.
60 Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
50 Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.
40 Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
30 Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
10 Mostly bedridden. Severe symptoms.
0 Bedridden constantly. Unable to care for self.
Finding Your Energy Envelope, Part 1 | CFIDS & Fibromyalgia Self-Help
Finding Your Energy Envelope, Part 1 | CFIDS & Fibromyalgia Self-Help: "Finding Your Limits: A Quick Answer
If you would like a general idea of your limits, rate yourself on the CFS & Fibromyalgia Rating Scale. Most of the students in our course have rated themselves between 25 and 45 at the start of the course, but we have had people across almost the full range of the scale.
Doh, should have done this first...I come out as;
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day
If you would like a general idea of your limits, rate yourself on the CFS & Fibromyalgia Rating Scale. Most of the students in our course have rated themselves between 25 and 45 at the start of the course, but we have had people across almost the full range of the scale.
Doh, should have done this first...I come out as;
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day
Managing Your Energy Envelope | CFIDS & Fibromyalgia Self-Help
Managing Your Energy Envelope | CFIDS & Fibromyalgia Self-Help: "Managing Your Energy Envelope"
Feeling a little less tired today despite my attempts to rest and "manage my energy" being foiled by the builders making a huge racket. Flu like feeling and dry, scratchy red eyes much improved today. So will try using the Wii again but otherwise a quiet day planned..
Feeling a little less tired today despite my attempts to rest and "manage my energy" being foiled by the builders making a huge racket. Flu like feeling and dry, scratchy red eyes much improved today. So will try using the Wii again but otherwise a quiet day planned..
Tuesday, January 12, 2010
New pacing regime for fibromyalgia
Not a great start, I fully intended to have a rest yesterday early afternoon but the the Wii fit & sports arrived so I just had to set it up nd then set up my profile and did the first assesment which reckoned I am two years older in Wii age than my real age..then I had to organise an online Asda shop and that was any chance of a rest out the window.
The result today?? Slept past the alarm which is usually a sign of a bad day to comme. I have full on brain fog, am eye-crossingly tired and every time I move my head I get lightening pains frm my crunchy neck up into my head.
So, off for 100% rest right now to see if that helps....
The result today?? Slept past the alarm which is usually a sign of a bad day to comme. I have full on brain fog, am eye-crossingly tired and every time I move my head I get lightening pains frm my crunchy neck up into my head.
So, off for 100% rest right now to see if that helps....
Monday, January 11, 2010
New Year new approach to pacing myself
I hope to avoid the cycle of feel good one day, do too much and crash for the rest of the week that I have been prone to.
I aim to follow the "manage your energy envelope" advice and get at least two proper rests a day which involves proper rest ie doing nothing, no TV, radio or reading for at least 15 minutes.
There is a Wii on its way so I hope to be able to also get back some muscle tone, I have tried walking, going to the gym etc but all have worsened my fbromyalgia symptoms, just getting to the gym with a kt bag proved too much!
I really also want to be less of a hermit but social activity is just so draining that that may take longer to achieve.
Updates to follow..
I aim to follow the "manage your energy envelope" advice and get at least two proper rests a day which involves proper rest ie doing nothing, no TV, radio or reading for at least 15 minutes.
There is a Wii on its way so I hope to be able to also get back some muscle tone, I have tried walking, going to the gym etc but all have worsened my fbromyalgia symptoms, just getting to the gym with a kt bag proved too much!
I really also want to be less of a hermit but social activity is just so draining that that may take longer to achieve.
Updates to follow..
diagnosis of fibromyalgia
Still in the dark ages I guess...
http://www.ncbi.nlm.nih.gov/pubmed/19962492?dopt=AbstractPlus
Diagnosis and differential diagnosis of fibromyalgia.
Goldenberg DL.
Department of Rheumatology, Newton-Wellesley Hospital, Newton, Massachusetts 02462, USA. dgoldenb@massmed.org
Fibromyalgia is a chronic functional illness that presents with widespread musculoskeletal pain as well as a constellation of symptoms including fatigue, cognitive dysfunction, sleep difficulties, stiffness, anxiety, and depressed mood. The diagnosis of fibromyalgia, similar to other functional disorders, requires that organic diseases are not causing the symptoms. Systemic and rheumatic diseases can be ruled out by a patient history, physical examination, and laboratory investigations. Because there are no specific laboratory tests for fibromyalgia, the 1990 American College of Rheumatology (ACR) classification criteria have been used in clinical settings; however, they are not ideal for individual patient diagnosis. Clinicians should be aware of limitations inherent in using tender points in the diagnosis of fibromyalgia. The multiple symptoms of fibromyalgia often overlap with those of related disorders and may further complicate the diagnosis. One of the most challenging diagnostic dilemmas that clinicians face is distinguishing fibromyalgia from other central pain disorders (e.g., irritable bowel syndrome, chronic fatigue syndrome, migraine). Screening questions based on published criteria can be used as a first approach in diagnosing functional illnesses. Numerous studies report a higher prevalence of psychiatric disorders in patients with fibromyalgia. Therefore, a careful history and evaluation should be taken for the presence of primary mood disturbances. To date, there is no "gold standard" for diagnosing fibromyalgia. Until a better clinical case definition of fibromyalgia exists, all diagnostic criteria should be interpreted with caution, considered rudimentary, and subject to modification. (c) 2009 Elsevier Inc.
PMID: 19962492 [PubMed - in process]
http://www.ncbi.nlm.nih.gov/pubmed/19962492?dopt=AbstractPlus
Diagnosis and differential diagnosis of fibromyalgia.
Goldenberg DL.
Department of Rheumatology, Newton-Wellesley Hospital, Newton, Massachusetts 02462, USA. dgoldenb@massmed.org
Fibromyalgia is a chronic functional illness that presents with widespread musculoskeletal pain as well as a constellation of symptoms including fatigue, cognitive dysfunction, sleep difficulties, stiffness, anxiety, and depressed mood. The diagnosis of fibromyalgia, similar to other functional disorders, requires that organic diseases are not causing the symptoms. Systemic and rheumatic diseases can be ruled out by a patient history, physical examination, and laboratory investigations. Because there are no specific laboratory tests for fibromyalgia, the 1990 American College of Rheumatology (ACR) classification criteria have been used in clinical settings; however, they are not ideal for individual patient diagnosis. Clinicians should be aware of limitations inherent in using tender points in the diagnosis of fibromyalgia. The multiple symptoms of fibromyalgia often overlap with those of related disorders and may further complicate the diagnosis. One of the most challenging diagnostic dilemmas that clinicians face is distinguishing fibromyalgia from other central pain disorders (e.g., irritable bowel syndrome, chronic fatigue syndrome, migraine). Screening questions based on published criteria can be used as a first approach in diagnosing functional illnesses. Numerous studies report a higher prevalence of psychiatric disorders in patients with fibromyalgia. Therefore, a careful history and evaluation should be taken for the presence of primary mood disturbances. To date, there is no "gold standard" for diagnosing fibromyalgia. Until a better clinical case definition of fibromyalgia exists, all diagnostic criteria should be interpreted with caution, considered rudimentary, and subject to modification. (c) 2009 Elsevier Inc.
PMID: 19962492 [PubMed - in process]
Thursday, January 07, 2010
Official Statement from the Whittemore Peterson Institute Regarding UK Study
Official Statement from the Whittemore Peterson Institute Regarding UK Study
http://www.wpinstitute.org/news/docs/WPI_Erlwein_010610.pdf
The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the
Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the
rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland
Clinic, therefore it cannot be considered a replication study nor can the results claim to be
anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.
The scientific methods used by WPI are very exact and require specific techniques to ensure
accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences
include, but are not limited to the following:
1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell
culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which
were not validated by a clinical control.
The WPI study was published after six months of rigorous review and three independent lab
confirmations, proving that contamination had not taken place and that infectious XMRV was
present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria.
In contrast, this latest study was published online after only three days of review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.
http://www.wpinstitute.org/news/docs/WPI_Erlwein_010610.pdf
The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the
Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the
rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland
Clinic, therefore it cannot be considered a replication study nor can the results claim to be
anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.
The scientific methods used by WPI are very exact and require specific techniques to ensure
accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences
include, but are not limited to the following:
1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell
culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which
were not validated by a clinical control.
The WPI study was published after six months of rigorous review and three independent lab
confirmations, proving that contamination had not taken place and that infectious XMRV was
present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria.
In contrast, this latest study was published online after only three days of review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.
Wednesday, January 06, 2010
XMRV research update
010603: "The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is conducting a rigorous study to detect XMRV. Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients. We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur.
Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide. Once XMRV detection methods are optimized and made widely available, we encourage this group of researchers to take another look at XMRV as a possible explanation for the organic basis of CFS in the U.K."
Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide. Once XMRV detection methods are optimized and made widely available, we encourage this group of researchers to take another look at XMRV as a possible explanation for the organic basis of CFS in the U.K."
Saturday, January 02, 2010
Response to the piece on NHS services for ME patients (The Argus, December 14
"Further to the piece on NHS services for ME patients (The Argus, December 14), in Sussex there are more than 6,000 adults and children affected by myalgic encephalopathy/ chronic fatigue syndrome, many of whom are virtually housebound.
ME is classified by the World Health Organisation as a neurological disorder and the National Institute for Health and Clinical Excellence has recently issued guidelines to the medical profession.
Most doctors these days recognise ME as a serious illness and do their best to treat and support patients.
However, the Primary Care Trusts of Sussex need to urgently provide funding to shore up and further develop the NHS Sussex-wide specialist service we help set up in 2005 and has dealt with more than 2,000 referrals. We can be reached on 01273 674828.
David Butler
trustee
Sussex ME/CFS Society
Robin Dene, Brighton"
ME is classified by the World Health Organisation as a neurological disorder and the National Institute for Health and Clinical Excellence has recently issued guidelines to the medical profession.
Most doctors these days recognise ME as a serious illness and do their best to treat and support patients.
However, the Primary Care Trusts of Sussex need to urgently provide funding to shore up and further develop the NHS Sussex-wide specialist service we help set up in 2005 and has dealt with more than 2,000 referrals. We can be reached on 01273 674828.
David Butler
trustee
Sussex ME/CFS Society
Robin Dene, Brighton"
ME treatment needs to improve
I should say so having had my last 20 years blighted by this illness with no proper diagnosis or integrated treatment whatsoever.
"By Siobhan Ryan »
It was once dismissed as nothing more than “yuppie flu” but over the years a greater understanding about the debilitating effects of ME has emerged.
The lives of many patients were left devastated by the disease as they struggled to cope with a whole range of symptoms ranging from extreme tiredness and lethargy to consistent pain and dizziness.
This was all up against a lack of knowledge and recognition from the medical profession and the general assumption that people should just “pull themselves together”.
But things have now changed significantly for the better.
ME is now recognised as a specific medical condition and NHS services specifically aimed at supporting and treating patients are now emerging across the country.
But according to the All-Party Parliamentary Group (APPG), chaired by Brighton Kemptown MP Des Turner, there is still plenty that needs to be done.
The group has recently published an interim report on its inquiry into the NHS services available.
Dr Turner said: “Currently, services offered to patients with ME or chronic fatigue syndrome (CFS) are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard.
“This is confounded by delays in diagnosis and failings on the part of GPs to recognise the disease or diagnose it.
“We found unacceptable variation in provision between different health trusts, which needs to be addressed.”"
"By Siobhan Ryan »
It was once dismissed as nothing more than “yuppie flu” but over the years a greater understanding about the debilitating effects of ME has emerged.
The lives of many patients were left devastated by the disease as they struggled to cope with a whole range of symptoms ranging from extreme tiredness and lethargy to consistent pain and dizziness.
This was all up against a lack of knowledge and recognition from the medical profession and the general assumption that people should just “pull themselves together”.
But things have now changed significantly for the better.
ME is now recognised as a specific medical condition and NHS services specifically aimed at supporting and treating patients are now emerging across the country.
But according to the All-Party Parliamentary Group (APPG), chaired by Brighton Kemptown MP Des Turner, there is still plenty that needs to be done.
The group has recently published an interim report on its inquiry into the NHS services available.
Dr Turner said: “Currently, services offered to patients with ME or chronic fatigue syndrome (CFS) are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard.
“This is confounded by delays in diagnosis and failings on the part of GPs to recognise the disease or diagnose it.
“We found unacceptable variation in provision between different health trusts, which needs to be addressed.”"
Wednesday, November 25, 2009
Current concerns
For the first time since my entire digestive tract was inflamed top to bottom my weight has dropped to under 9 stone (around 57kg) despite my gastric symptoms being ok for me...
( IBS plays up now and then with pain and diarrhea alternting with rabbit dropping constipation, but not hing like it was before I cut out dairy - vomiting every day or food passing through in just a few hours...)
I do have a chronic cough and frequent sweats plus the usual overwhelming fatigue, migraines etc etc so off for a chest x-ray first then god knows what the GP will do next..ho hum
( IBS plays up now and then with pain and diarrhea alternting with rabbit dropping constipation, but not hing like it was before I cut out dairy - vomiting every day or food passing through in just a few hours...)
I do have a chronic cough and frequent sweats plus the usual overwhelming fatigue, migraines etc etc so off for a chest x-ray first then god knows what the GP will do next..ho hum
C.F.S. Q&A
Worth a read...
Times Delivers E-Mail - Sign Up:
"When Chronic Fatigue Syndrome Goes Undiagnosed
Q.Dr. Klimas,
Do you have any thoughts as to how many C.F.S. patients are under the radar because they were not eager to sign up for a “wastebasket” diagnosis, or otherwise frustrated out of the medical system early on?
There are many other labels that would be easier to deal with: chronic Lyme, depression, etc. What are the ramifications of an actual clinical diagnostic test for C.F.S. on the medical and patient communities? Can you foresee any possible unintended consequences?
Skeptic
A.Dr. Klimas responds:
Currently only 16 percent to 17 percent of the people with chronic fatigue syndrome whose symptoms are severe enough to meet the case definition for the illness have been diagnosed. Whether this is coming from the patient, as you suggest, or a medical community that does not know how or is reluctant to make the diagnosis is less clear."
Times Delivers E-Mail - Sign Up:
"When Chronic Fatigue Syndrome Goes Undiagnosed
Q.Dr. Klimas,
Do you have any thoughts as to how many C.F.S. patients are under the radar because they were not eager to sign up for a “wastebasket” diagnosis, or otherwise frustrated out of the medical system early on?
There are many other labels that would be easier to deal with: chronic Lyme, depression, etc. What are the ramifications of an actual clinical diagnostic test for C.F.S. on the medical and patient communities? Can you foresee any possible unintended consequences?
Skeptic
A.Dr. Klimas responds:
Currently only 16 percent to 17 percent of the people with chronic fatigue syndrome whose symptoms are severe enough to meet the case definition for the illness have been diagnosed. Whether this is coming from the patient, as you suggest, or a medical community that does not know how or is reluctant to make the diagnosis is less clear."
Monday, November 16, 2009
More evidence of inflammation in (ME)CFS
Margaret Williams 14th November 2009
http://www.meactionuk.org.uk/More-evidence-of-inflammation-in-
In his presentation in Bergen on 20th November 2009, Professor Peter White's
power point slides state about (ME)CFS that maintaining factors include
illness beliefs, the search for legitimacy, being on benefits, and the
diagnostic label, and that immune or viral measures are NOT involved in the
maintenance of the disorder
( http://www.unifobhelse.no/upload/Bergen%20What%20is%20CFS%202009.pdf ).
White's assertion that immune or viral measures are not involved in the
maintenance of the disorder would seem to be a direct denial of the evidence
of two of the world's leading immunologists who specialise in ME/CFS,
Professors Mary Ann Fletcher and Nancy Klimas, who recently published yet
more confirmatory evidence of immune dysfunction in the maintenance of the
disorder (Journal of Translational Medicine 2009:7:96:
doi:10.1186/1479-5876-7-96). Their peer reviewed article was published
immediately upon acceptance.
Fletcher and Klimas et al are clear that cytokine abnormalities are common
in (ME)CFS and that the cytokine changes observed are more likely to be
indicative of immune activation and inflammation, rather than specific for
(ME)CFS, as people with fibromyalgia, Gulf War Illness, rheumatological
disorders and multiple sclerosis may also have similar cytokine patterns.
...."The elevations in LTa, IL-1a, IL1b and IL-6 indicate inflammation, likely
to be accompanied by autoantibody production, inappropriate fatigue, myalgia
and arthralgia, as well as changes in mood and sleep patterns.
"This study is among the first in the (ME)CFS literature to report the
plasma profiles of a reasonably large panel of cytokines assessed
simultaneously by multiplex technique.
"Cytokine abnormalities appear to be common in (ME)CFS. The changes from the
normal position indicate immune activation and inflammation.
"The results imply a disorganised regulatory pattern of TH1 function,
critical to antiviral defence.
"The results from this study support a TH2 shift, pro-inflammatory cytokine
up-regulation and down-regulation of important mediators of cytotoxic cell
function".
Since it is now unequivocal that people with (ME)CFS show markers of
inflammation, what will be the impact on the Wessely School's MRC PACE Trial
that is predicated on the assumptions of deconditioning, on the "perception"
of effort and on aberrant illness beliefs and whose participants are
instructed about "sleep hygiene"?
http://www.meactionuk.org.uk/More-evidence-of-inflammation-in-
In his presentation in Bergen on 20th November 2009, Professor Peter White's
power point slides state about (ME)CFS that maintaining factors include
illness beliefs, the search for legitimacy, being on benefits, and the
diagnostic label, and that immune or viral measures are NOT involved in the
maintenance of the disorder
( http://www.unifobhelse.no/upload/Bergen%20What%20is%20CFS%202009.pdf ).
White's assertion that immune or viral measures are not involved in the
maintenance of the disorder would seem to be a direct denial of the evidence
of two of the world's leading immunologists who specialise in ME/CFS,
Professors Mary Ann Fletcher and Nancy Klimas, who recently published yet
more confirmatory evidence of immune dysfunction in the maintenance of the
disorder (Journal of Translational Medicine 2009:7:96:
doi:10.1186/1479-5876-7-96). Their peer reviewed article was published
immediately upon acceptance.
Fletcher and Klimas et al are clear that cytokine abnormalities are common
in (ME)CFS and that the cytokine changes observed are more likely to be
indicative of immune activation and inflammation, rather than specific for
(ME)CFS, as people with fibromyalgia, Gulf War Illness, rheumatological
disorders and multiple sclerosis may also have similar cytokine patterns.
...."The elevations in LTa, IL-1a, IL1b and IL-6 indicate inflammation, likely
to be accompanied by autoantibody production, inappropriate fatigue, myalgia
and arthralgia, as well as changes in mood and sleep patterns.
"This study is among the first in the (ME)CFS literature to report the
plasma profiles of a reasonably large panel of cytokines assessed
simultaneously by multiplex technique.
"Cytokine abnormalities appear to be common in (ME)CFS. The changes from the
normal position indicate immune activation and inflammation.
"The results imply a disorganised regulatory pattern of TH1 function,
critical to antiviral defence.
"The results from this study support a TH2 shift, pro-inflammatory cytokine
up-regulation and down-regulation of important mediators of cytotoxic cell
function".
Since it is now unequivocal that people with (ME)CFS show markers of
inflammation, what will be the impact on the Wessely School's MRC PACE Trial
that is predicated on the assumptions of deconditioning, on the "perception"
of effort and on aberrant illness beliefs and whose participants are
instructed about "sleep hygiene"?
Sunday, November 15, 2009
Chronic fatigue syndrome: neurological, psychological or both?
Chronic fatigue syndrome: neurological, psychological or both?
Peter White, Professor of Psychological Medicine, Barts and the London Medical School
A long read but well worth it
THE BRITISH NEUROPSYCHIATRY ASSOCIATION
http://www.bnpa.org.uk
http://bnpa.org.uk/doc/HANDBOOK.pdf
Neurology and Psychiatry SpRs Teaching Weekend
12 to 14 December 2008 St Anne's College - Oxford
THE ESSENTIALS OF NEUROPSYCHIATRY
Presentations:
[...]
09:50 Chronic fatigue syndrome: neurological, psychological or both?
Peter White, Professor of Psychological Medicine, Barts and the London
Medical School
The extract I am appending is a summary of Professor Peter Denton White's
presentation (Page 46 of PDF) in which he talks about the taxonomy of CFS
"being a mess".
During his Royal Society of Medicine "CFS" Conference presentation, in
April 2008, White had said, ominously:
"...So ICD-10 is not helpful and I would not suggest, as clinicians, you
use ICD-10 criteria. They really need sorting out; and they will be in due
course, God willing."
See unofficial transcript of part of White's RSM presentation, here, in
which he presents his thoughts on current ICD taxonomy:
Prof Peter White discouraging RSM Conference from using ICD-10:
http://tinyurl.com/PDW-RSM-ICD-10
In an April 2009 paper, co-authored by White, the authors propose a change
to current ICD-10 codings:
http://www.ncbi.nlm.nih.gov/pubmed/19366500
Psychological Medicine Preprint "Risk markers for both chronic fatigue and
irritable bowel syndromes: a prospective case-control study of primary
care"
In the section "Implications for Further Research" the authors state that
because the paper finds that:
"These data also suggest that fatigue syndromes are heterogeneous
(Vollmer-Conna et al. 2006), and that CFS/ME and PVFS should be considered
as separate conditions, with CFS/ME having more in common with IBS than
PVFS does (Aggarwal et al. 2006). This requires revision of the ICD-10
taxonomy, which classifies PVFS with ME (WHO, 1992)"
----------------
http://bnpa.org.uk/doc/HANDBOOK.pdf
Extract: presentation given at Neurology and Psychiatry SpRs Teaching
Weekend
Chronic fatigue syndrome: neurological, psychological or both?
Peter White, Professor of Psychological Medicine, Barts and the London
Medical School
Epidemiology of fatigue and CFS
Fatigue is a common symptom in both the community and primary care. When
asked, between 10 and 20 per cent of people in the community will report
feeling abnormally tired at any one time.
At the same time, fatigue is continuously distributed within the community,
with no point of rarity.
Therefore any cut-off is arbitrary and the prevalence will vary by how the
question is asked, the symptom volunteered, and its context. Between 1.5 %
and 6.5 % of European patients will consult their general practitioner with
a primary complaint of fatigue every year, the incidence varying by age and
population. Fatigue is more commonly reported and presented to general
practitioners by women and the middle-aged, and is most closely associated
with mood disorders and reported stress. It does not seem to vary by
ethnicity in the UK, but there is an intriguing paradox in that it is
reported more commonly by those in high income countries, yet is presented
to medical care more often in low income countries.
Prolonged or chronic fatigue is significantly less common than the symptom
of fatigue and it is only in the last 10 years that consensus has emerged
about the existence of a chronic fatigue syndrome (CFS), also called
myalgic encephalomyelitis (ME). CFS is now accepted as a valid diagnosis by
medical authorities in the UK, in the United States of America, as well as
internationally. About one third of patients presenting to their doctor
with six months of fatigue will meet criteria for a chronic fatigue
syndrome. The other two thirds have fatigue secondary to another condition,
most commonly mood and primary sleep disorders. Its primary symptom is
fatigue, both physical and mental, which particularly follows exertion.
Other symptoms agreed in consensual guidelines include poor concentration
and memory, sleep disturbance, headache, sore throat, tender lymph glands,
muscle and joint pain.
There are several criterion based definitions of CFS. These definitions
were derived by consensus and have not been supported by empirical studies,
and continue to be refined. Their utility stems from providing reliable
criteria for research studies, rather than clinical use. The prevalence of
CFS is between 2.5 % and 0.4 % depending on the definition used and whether
comorbid mood disorders are excluded (that is mood disorders that are not
thought to be the primary diagnoses). It is most common in women, the
middle-aged, and ethnic minorities (unlike fatigue) - at least in English
speaking countries.
The diagnosis and classification of CFS
The clinical taxonomy for CFS is a mess. The ICD-10 classification defines
CFS within both the neurology chapter and mental health chapters. Myalgic
encephalomyelitis, the alternative name for CFS, is classified as a
neurological disease (G93.3) (a.k.a. post-viral CFS), whereas neurasthenia
(a.k.a. CFS not otherwise specified) is classified within mental health
(F48).
[Ed: Note that White does not mention, here, that Chronic fatigue syndrome
is listed in ICD-10: Volume 3, The Alphabetical Index* at G93.3, the same
coding as for Benign myalgic encephalomyelitis, and for Postviral fatigue
syndrome (ICD-10: Volume 1: The Tabular List).]
Peter White, Professor of Psychological Medicine, Barts and the London Medical School
A long read but well worth it
THE BRITISH NEUROPSYCHIATRY ASSOCIATION
http://www.bnpa.org.uk
http://bnpa.org.uk/doc/HANDBOOK.pdf
Neurology and Psychiatry SpRs Teaching Weekend
12 to 14 December 2008 St Anne's College - Oxford
THE ESSENTIALS OF NEUROPSYCHIATRY
Presentations:
[...]
09:50 Chronic fatigue syndrome: neurological, psychological or both?
Peter White, Professor of Psychological Medicine, Barts and the London
Medical School
The extract I am appending is a summary of Professor Peter Denton White's
presentation (Page 46 of PDF) in which he talks about the taxonomy of CFS
"being a mess".
During his Royal Society of Medicine "CFS" Conference presentation, in
April 2008, White had said, ominously:
"...So ICD-10 is not helpful and I would not suggest, as clinicians, you
use ICD-10 criteria. They really need sorting out; and they will be in due
course, God willing."
See unofficial transcript of part of White's RSM presentation, here, in
which he presents his thoughts on current ICD taxonomy:
Prof Peter White discouraging RSM Conference from using ICD-10:
http://tinyurl.com/PDW-RSM-ICD-10
In an April 2009 paper, co-authored by White, the authors propose a change
to current ICD-10 codings:
http://www.ncbi.nlm.nih.gov/pubmed/19366500
Psychological Medicine Preprint "Risk markers for both chronic fatigue and
irritable bowel syndromes: a prospective case-control study of primary
care"
In the section "Implications for Further Research" the authors state that
because the paper finds that:
"These data also suggest that fatigue syndromes are heterogeneous
(Vollmer-Conna et al. 2006), and that CFS/ME and PVFS should be considered
as separate conditions, with CFS/ME having more in common with IBS than
PVFS does (Aggarwal et al. 2006). This requires revision of the ICD-10
taxonomy, which classifies PVFS with ME (WHO, 1992)"
----------------
http://bnpa.org.uk/doc/HANDBOOK.pdf
Extract: presentation given at Neurology and Psychiatry SpRs Teaching
Weekend
Chronic fatigue syndrome: neurological, psychological or both?
Peter White, Professor of Psychological Medicine, Barts and the London
Medical School
Epidemiology of fatigue and CFS
Fatigue is a common symptom in both the community and primary care. When
asked, between 10 and 20 per cent of people in the community will report
feeling abnormally tired at any one time.
At the same time, fatigue is continuously distributed within the community,
with no point of rarity.
Therefore any cut-off is arbitrary and the prevalence will vary by how the
question is asked, the symptom volunteered, and its context. Between 1.5 %
and 6.5 % of European patients will consult their general practitioner with
a primary complaint of fatigue every year, the incidence varying by age and
population. Fatigue is more commonly reported and presented to general
practitioners by women and the middle-aged, and is most closely associated
with mood disorders and reported stress. It does not seem to vary by
ethnicity in the UK, but there is an intriguing paradox in that it is
reported more commonly by those in high income countries, yet is presented
to medical care more often in low income countries.
Prolonged or chronic fatigue is significantly less common than the symptom
of fatigue and it is only in the last 10 years that consensus has emerged
about the existence of a chronic fatigue syndrome (CFS), also called
myalgic encephalomyelitis (ME). CFS is now accepted as a valid diagnosis by
medical authorities in the UK, in the United States of America, as well as
internationally. About one third of patients presenting to their doctor
with six months of fatigue will meet criteria for a chronic fatigue
syndrome. The other two thirds have fatigue secondary to another condition,
most commonly mood and primary sleep disorders. Its primary symptom is
fatigue, both physical and mental, which particularly follows exertion.
Other symptoms agreed in consensual guidelines include poor concentration
and memory, sleep disturbance, headache, sore throat, tender lymph glands,
muscle and joint pain.
There are several criterion based definitions of CFS. These definitions
were derived by consensus and have not been supported by empirical studies,
and continue to be refined. Their utility stems from providing reliable
criteria for research studies, rather than clinical use. The prevalence of
CFS is between 2.5 % and 0.4 % depending on the definition used and whether
comorbid mood disorders are excluded (that is mood disorders that are not
thought to be the primary diagnoses). It is most common in women, the
middle-aged, and ethnic minorities (unlike fatigue) - at least in English
speaking countries.
The diagnosis and classification of CFS
The clinical taxonomy for CFS is a mess. The ICD-10 classification defines
CFS within both the neurology chapter and mental health chapters. Myalgic
encephalomyelitis, the alternative name for CFS, is classified as a
neurological disease (G93.3) (a.k.a. post-viral CFS), whereas neurasthenia
(a.k.a. CFS not otherwise specified) is classified within mental health
(F48).
[Ed: Note that White does not mention, here, that Chronic fatigue syndrome
is listed in ICD-10: Volume 3, The Alphabetical Index* at G93.3, the same
coding as for Benign myalgic encephalomyelitis, and for Postviral fatigue
syndrome (ICD-10: Volume 1: The Tabular List).]
Friday, November 13, 2009
comments on meeting of the Chronic Fatigue Syndrome Advisory Committee
One patient wrote to me recently describing her immense relief: she had been afraid she would die without ever finding out what was wrong with her.
I imagine many thousands—maybe hundreds of thousands of others—who fell ill in the epidemic years of the 1980s, felt the same. I know I did. The question was never whether we were ill with one of the worst diseases imaginable—it was whether we could ever learn the answer to the great mystery, the actual cause, the pathogen, before we dropped dead of it. And now it has been clarified: twenty-five years of retroviral infection, untreated, ignored, laughed at, allowed to wreak havoc, allowed to spread until penetration in the general population may have reached four percent—give or take.
http://oslersweb.com/blog.htm?post=646449
I imagine many thousands—maybe hundreds of thousands of others—who fell ill in the epidemic years of the 1980s, felt the same. I know I did. The question was never whether we were ill with one of the worst diseases imaginable—it was whether we could ever learn the answer to the great mystery, the actual cause, the pathogen, before we dropped dead of it. And now it has been clarified: twenty-five years of retroviral infection, untreated, ignored, laughed at, allowed to wreak havoc, allowed to spread until penetration in the general population may have reached four percent—give or take.
http://oslersweb.com/blog.htm?post=646449
XMRV TESTING VIP Dx
VIP Dx: "LATEST NEWS: XMRV TESTING
Dr. Vincent Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of “Science”, is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV. To read this landmark publication, 'Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome', please go to (www.sciencemag.org). We are pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease).
TO ORDER XAND TEST KITS, CONTACT VIP Dx.
To learn more about our XMRV tests, CLICK HERE."
Dr. Vincent Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of “Science”, is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV. To read this landmark publication, 'Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome', please go to (www.sciencemag.org). We are pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease).
TO ORDER XAND TEST KITS, CONTACT VIP Dx.
To learn more about our XMRV tests, CLICK HERE."
EXERCISE THERAPY/PSYCHOTHERAPY HARMFUL INEFFECTIVE,
http://www.ediver.be/ediver/latest%20news/PRESS%20RELEASE%20CBT%20and%20GET%
20in%20ME%20CFS.pdf
PRESS RELEASE
EXERCISE THERAPY/PSYCHOTHERAPY NOT ONLY INEFFECTIVE,
BUT ALSO POTENTIALLY HARMFUL FOR MANY PATIENTS WITH ME/CFS
A recent review of the relevant scientific literature shows that the
"revalidation therapies" for patients with ME/CFS, which are monopolized by
the governmental institutions for example in the UK, Belgium and the
Netherlands, are not only not efficient, but also aggravate the condition of
many patients.
Antwerp (Belgium); Limmen (the Netherlands), October 27th, 2009.
ME/CFS is a debilitating disease, affecting many biological systems.
According to the CDC, the level of impairment of ME/CFS patients is often
comparable to that of patients with some well-known, very severe medical
conditions, such as MS, AIDS, end-stage renal failure, and chronic
obstructive
pulmonary disease.
There is now sufficient evidence that ME/CFS is a disorder that
primarily involves an inflammation with dysregulated and suppressed
immune functions, oxidative stress, infections, autoimmunity and
mitochondrial dysfunction. During the last few years, many scientific
studies,
including gene expression research, have confirmed that patients with
ME/CFS suffer from the above organic disorders.
Despite several major scientific breakthroughs, ME/CFS is still
described in the popular media as a medically unexplained disorder.
Psychotherapy (cognitive behavioral therapy) and graded exercise therapy
(GET) are declared to be the only possible therapies.
A thorough analysis of the current medical scientific literature and
international patient surveys, however, shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also potentially
very
harmful. Scientific studies and large-scaled patient surveys have shown that
treatments with CBT/GET seriously deteriorate the condition of many patients
with ME/CFS. The work capacity decreased as well!
The review also explains why GET and exercise do aggravate
characteristic complaints, like “fatigue”, pain, neurocognitive problems
(e.g.
concentration and memory). Pre-existing biological aberrations, e.g.
inflammation, oxidative stress, and dysfunctional ion channels, will be
amplified by a minor exertion, like walking or reading a book … and by
“rehabilitation therapies” like CBT/GET.
The reviewers urge policy makers to change their policies drastically,
by putting a stop to potentially harmful and ineffective "rehabilitation"
programs, and investing into medical research and therapies targeted at the
immune system, infections and other pathological aspects of this horrible
/wasting disease.
References:
Twisk FNM, Maes M. A review on Cognitive Behavorial Therapy (CBT) and
Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic
Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not
evidencebased,
but also potentially harmful for many patients with ME/CFS. Neuro
Endocrinol Lett. 2009 Aug 26;30(3):284-299.
Maes M, Twisk FNM. Chronic fatigue syndrome: la bête noire of the Belgian
health care system. Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.
Information:
Frank Twisk MBA BEd BEc
Stichting ME-de-patiënten / ME-de-patiënten Foundation
Zonnedauw 15
1906 HB Limmen
Nederland / the Netherlands
Tel. +31-(0)72-505 4775
frank.twisk@hetnet.nl
www.michaelmaes.com (here you can download the full text)
20in%20ME%20CFS.pdf
PRESS RELEASE
EXERCISE THERAPY/PSYCHOTHERAPY NOT ONLY INEFFECTIVE,
BUT ALSO POTENTIALLY HARMFUL FOR MANY PATIENTS WITH ME/CFS
A recent review of the relevant scientific literature shows that the
"revalidation therapies" for patients with ME/CFS, which are monopolized by
the governmental institutions for example in the UK, Belgium and the
Netherlands, are not only not efficient, but also aggravate the condition of
many patients.
Antwerp (Belgium); Limmen (the Netherlands), October 27th, 2009.
ME/CFS is a debilitating disease, affecting many biological systems.
According to the CDC, the level of impairment of ME/CFS patients is often
comparable to that of patients with some well-known, very severe medical
conditions, such as MS, AIDS, end-stage renal failure, and chronic
obstructive
pulmonary disease.
There is now sufficient evidence that ME/CFS is a disorder that
primarily involves an inflammation with dysregulated and suppressed
immune functions, oxidative stress, infections, autoimmunity and
mitochondrial dysfunction. During the last few years, many scientific
studies,
including gene expression research, have confirmed that patients with
ME/CFS suffer from the above organic disorders.
Despite several major scientific breakthroughs, ME/CFS is still
described in the popular media as a medically unexplained disorder.
Psychotherapy (cognitive behavioral therapy) and graded exercise therapy
(GET) are declared to be the only possible therapies.
A thorough analysis of the current medical scientific literature and
international patient surveys, however, shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also potentially
very
harmful. Scientific studies and large-scaled patient surveys have shown that
treatments with CBT/GET seriously deteriorate the condition of many patients
with ME/CFS. The work capacity decreased as well!
The review also explains why GET and exercise do aggravate
characteristic complaints, like “fatigue”, pain, neurocognitive problems
(e.g.
concentration and memory). Pre-existing biological aberrations, e.g.
inflammation, oxidative stress, and dysfunctional ion channels, will be
amplified by a minor exertion, like walking or reading a book … and by
“rehabilitation therapies” like CBT/GET.
The reviewers urge policy makers to change their policies drastically,
by putting a stop to potentially harmful and ineffective "rehabilitation"
programs, and investing into medical research and therapies targeted at the
immune system, infections and other pathological aspects of this horrible
/wasting disease.
References:
Twisk FNM, Maes M. A review on Cognitive Behavorial Therapy (CBT) and
Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic
Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not
evidencebased,
but also potentially harmful for many patients with ME/CFS. Neuro
Endocrinol Lett. 2009 Aug 26;30(3):284-299.
Maes M, Twisk FNM. Chronic fatigue syndrome: la bête noire of the Belgian
health care system. Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.
Information:
Frank Twisk MBA BEd BEc
Stichting ME-de-patiënten / ME-de-patiënten Foundation
Zonnedauw 15
1906 HB Limmen
Nederland / the Netherlands
Tel. +31-(0)72-505 4775
frank.twisk@hetnet.nl
www.michaelmaes.com (here you can download the full text)
Thursday, October 29, 2009
CBT & GET in ME/CFS Harmful for Patients -Review
CBT = cognitive behavioural therapy
GET = graded exercise therapy
Society of Integrated Sciences
Abstract
Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a debilitating disease which, despite numerous biological abnormalities has
remained highly controversial.
Notwithstanding the medical pathogenesis of ME/CFS, the (bio)psychosocial model is adopted by many governmental organizations and medical professionals to legitimize the combination of Cognitive Behavioral Therapy (CBT) and Graded
Exercise Therapy (GET) for ME/CFS.
Justified by this model CBT and GET aim at eliminating presumed psychogenic and socially induced maintaining factors and reversing deconditioning, respectively.
In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust.
CBT/ GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them
adversely, the majority of them even reporting substantial deterioration.
Moreover, this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients.
Exertion induces post-exertional malaise with a decreased physical performance/ aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, fatigue", and weakness, and a long lasting "recovery" time.
This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune
dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal axis.
We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies",such as CBT/GET.
GET = graded exercise therapy
Society of Integrated Sciences
Abstract
Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a debilitating disease which, despite numerous biological abnormalities has
remained highly controversial.
Notwithstanding the medical pathogenesis of ME/CFS, the (bio)psychosocial model is adopted by many governmental organizations and medical professionals to legitimize the combination of Cognitive Behavioral Therapy (CBT) and Graded
Exercise Therapy (GET) for ME/CFS.
Justified by this model CBT and GET aim at eliminating presumed psychogenic and socially induced maintaining factors and reversing deconditioning, respectively.
In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust.
CBT/ GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them
adversely, the majority of them even reporting substantial deterioration.
Moreover, this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients.
Exertion induces post-exertional malaise with a decreased physical performance/ aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, fatigue", and weakness, and a long lasting "recovery" time.
This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune
dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal axis.
We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies",such as CBT/GET.
Monday, October 26, 2009
Support the 500 Professionals of the IACFS/ME – Reeves Must Go
RESCIND rescindinc.org@gmail.com
Support the 500 Professionals of the IACFS/ME – Reeves Must Go
On May 27th and May 28th, 2009, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) convened in Washington, D.C. Among their recommendations to the Secretary of Health and Human Services was a call for new and progressive leadership at the CDC’s ME/CFS research division.
We, the public, need to back the IACFS/ME and the CFSAC. Under Bill Reeves’ regime, funding has routinely decreased and increasingly broad definitions which have ceased to have any clinical meaning or research value have been implemented.
Under Reeves’ direction the CFS program is being slowly strangled.
A couple of weeks ago, Dr. Judy Mikovits, who is a retrovirus expert at the Whittemore Peterson Institute, released the results of a study which provided overwhelming evidence that xenotropic murine leukemia virus-related virus, or XMRV, could very well be the third human retrovirus.
Mikovits found that in a study of 101 CFS patients, 67% were found to have XMRV in their cells, but this is really not new news. In 1991 Dr. Elaine Defreitas found retroviral DNA in 80% of her study’s 30 CFS patients. The CDC “replicated” her study, did not follow her exact procedure, and ended the study prematurely while ostracizing Defreitas.
What does Reeves say about Mikovits recent discovery? Without doing any study or due diligence Reeves dismisses the findings by saying that they are “unexpected and surprising” and that it is “almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS.”
Deceit and incompetence have increasingly become the order of the day. The money that Bill Reeves has been receiving has been terribly mismanaged as he desperately strives to forestall the slow but inevitable pace of biomedical research.
Inappropriate management of funds prevents collaboration with biomedical experts, as well as collaboration with psychosocial experts who are not trying to build a career in psychosomatic medicine.
Bill Reeves must be held accountable.
Inaccurate stereotypes persist because Bill Reeves has not been accurately educating the public on the seriousness of this disease.
CFS is not a disease of “feeling a little tired,” no matter what you call it; this is a severe neuro-immune disease of among other things, debilitating exhaustion completely out of proportion to exertion. Patients may be too exhausted to even be able to chew their food, leave their beds and much less even work – and remain so year after year. Is that your neighbor’s experience of tired?
Perhaps you suffer from CFS, perhaps your patients do, or perhaps a loved one does; your best interests are not and have not been at the heart of the CDC’s program. What’s at the heart of the program is job security for Bill Reeves, his paycheck and collaboration with his pals – not finding ways to combat and track this horrible disease.
We need you now more than ever. Right now is the first real chance that we have had in nearly 30 years to fight Reeves in force; to fight for you, your loved ones, or your patients. Everyone from researchers to advocates are in agreement – Reeves must go. And we must make it happen. No one will do it for us.
Join members of the IACFS/ME at the CFSAC’s October 29-30th meeting in Washington, D.C. Do not let the hard work of other advocates and researchers over the years be for nothing. We need to show that we cannot be silenced and we will never give up.
If you cannot personally attend, find someone to attend in your place. Ask your parents, your children, your spouses or friends to attend in your place. Ask your elected officials to have aids attend.
The answer is always no if you don’t ask – we must make it happen – none of us can live with the alternative.
Reeves must go.
Support the 500 Professionals of the IACFS/ME – Reeves Must Go
On May 27th and May 28th, 2009, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) convened in Washington, D.C. Among their recommendations to the Secretary of Health and Human Services was a call for new and progressive leadership at the CDC’s ME/CFS research division.
We, the public, need to back the IACFS/ME and the CFSAC. Under Bill Reeves’ regime, funding has routinely decreased and increasingly broad definitions which have ceased to have any clinical meaning or research value have been implemented.
Under Reeves’ direction the CFS program is being slowly strangled.
A couple of weeks ago, Dr. Judy Mikovits, who is a retrovirus expert at the Whittemore Peterson Institute, released the results of a study which provided overwhelming evidence that xenotropic murine leukemia virus-related virus, or XMRV, could very well be the third human retrovirus.
Mikovits found that in a study of 101 CFS patients, 67% were found to have XMRV in their cells, but this is really not new news. In 1991 Dr. Elaine Defreitas found retroviral DNA in 80% of her study’s 30 CFS patients. The CDC “replicated” her study, did not follow her exact procedure, and ended the study prematurely while ostracizing Defreitas.
What does Reeves say about Mikovits recent discovery? Without doing any study or due diligence Reeves dismisses the findings by saying that they are “unexpected and surprising” and that it is “almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS.”
Deceit and incompetence have increasingly become the order of the day. The money that Bill Reeves has been receiving has been terribly mismanaged as he desperately strives to forestall the slow but inevitable pace of biomedical research.
Inappropriate management of funds prevents collaboration with biomedical experts, as well as collaboration with psychosocial experts who are not trying to build a career in psychosomatic medicine.
Bill Reeves must be held accountable.
Inaccurate stereotypes persist because Bill Reeves has not been accurately educating the public on the seriousness of this disease.
CFS is not a disease of “feeling a little tired,” no matter what you call it; this is a severe neuro-immune disease of among other things, debilitating exhaustion completely out of proportion to exertion. Patients may be too exhausted to even be able to chew their food, leave their beds and much less even work – and remain so year after year. Is that your neighbor’s experience of tired?
Perhaps you suffer from CFS, perhaps your patients do, or perhaps a loved one does; your best interests are not and have not been at the heart of the CDC’s program. What’s at the heart of the program is job security for Bill Reeves, his paycheck and collaboration with his pals – not finding ways to combat and track this horrible disease.
We need you now more than ever. Right now is the first real chance that we have had in nearly 30 years to fight Reeves in force; to fight for you, your loved ones, or your patients. Everyone from researchers to advocates are in agreement – Reeves must go. And we must make it happen. No one will do it for us.
Join members of the IACFS/ME at the CFSAC’s October 29-30th meeting in Washington, D.C. Do not let the hard work of other advocates and researchers over the years be for nothing. We need to show that we cannot be silenced and we will never give up.
If you cannot personally attend, find someone to attend in your place. Ask your parents, your children, your spouses or friends to attend in your place. Ask your elected officials to have aids attend.
The answer is always no if you don’t ask – we must make it happen – none of us can live with the alternative.
Reeves must go.
Sunday, October 25, 2009
CFS Public Health Research Program 5-year Strategic Plan | CDC Chronic Fatigue Syndrome
CFS Public Health Research Program 5-year Strategic Plan | CDC Chronic Fatigue Syndrome:
Heavy reading but could impact on the future treatment and well being of all with CFS
"Laboratory Studies
The integration of laboratory studies with specific CFS research protocols helps to clarify associations of behavioral and environmental risk factors (including infection) with clinical and psychosocial attributes of CFS, to identify subsets of the illness CFS, and to identify potential therapeutic targets.
Measure neuroendocrinologic, metabolic, immunologic, and infectious characteristics of CFS
Evaluate genetics, epigenetics, and gene expression
Identify potential diagnostic and therapeutic agents
Evaluate the potential association of human herpes virus 6 (HHV-6) and xenotropic murine leukemia virus-related virus (XMRV) with CFS using specimens from well-characterized patients and matched controls
Maintain a biorepository of clinical specimens collected during population and clinical studies for in-house and collaborative molecular analyses
Develop a funding opportunity announcement to explore the application of novel pathogen discovery approaches to existing, well-characterized clinical specimens...
Clinical Intervention Studies
Clinical behavioral intervention studies will be conducted in collaboration with Emory University School of Medicine, Bibb County Medical Society, Mercer School of Medicine, Mayo Clinic, and UK National Health Service. Anticipated protocol development will begin in late 2010-2011, with studies continuing through 2013.
Evaluate cognitive behavioral therapy and graded exercise in participants
Stratify impact of intervention by various parameters including duration of illness, onset type, early life stress, psychiatric comorbidity, cortisol responsiveness, and fMRI changes"
Heavy reading but could impact on the future treatment and well being of all with CFS
"Laboratory Studies
The integration of laboratory studies with specific CFS research protocols helps to clarify associations of behavioral and environmental risk factors (including infection) with clinical and psychosocial attributes of CFS, to identify subsets of the illness CFS, and to identify potential therapeutic targets.
Measure neuroendocrinologic, metabolic, immunologic, and infectious characteristics of CFS
Evaluate genetics, epigenetics, and gene expression
Identify potential diagnostic and therapeutic agents
Evaluate the potential association of human herpes virus 6 (HHV-6) and xenotropic murine leukemia virus-related virus (XMRV) with CFS using specimens from well-characterized patients and matched controls
Maintain a biorepository of clinical specimens collected during population and clinical studies for in-house and collaborative molecular analyses
Develop a funding opportunity announcement to explore the application of novel pathogen discovery approaches to existing, well-characterized clinical specimens...
Clinical Intervention Studies
Clinical behavioral intervention studies will be conducted in collaboration with Emory University School of Medicine, Bibb County Medical Society, Mercer School of Medicine, Mayo Clinic, and UK National Health Service. Anticipated protocol development will begin in late 2010-2011, with studies continuing through 2013.
Evaluate cognitive behavioral therapy and graded exercise in participants
Stratify impact of intervention by various parameters including duration of illness, onset type, early life stress, psychiatric comorbidity, cortisol responsiveness, and fMRI changes"
Pacing and CFS
I don't have the (mental) energy to blog every day, although I often have a siesta maybe I should follow this advise and make sure I rest every day rather than fighting it?
http://www.cfids.org/cfidslink/2009/080505.pdf
Pacing is not a quick fix or a
panacea. It requires many small
adjustments in how you live your
daily life. It’s not a single action or
strategy, but rather a way of living
with CFS. But the rewards of pacing,
used consistently, are greater control,
lower symptoms and, for some,
expansion of the energy envelope
and even recovery.
http://www.cfids.org/cfidslink/2009/080505.pdf
Pacing is not a quick fix or a
panacea. It requires many small
adjustments in how you live your
daily life. It’s not a single action or
strategy, but rather a way of living
with CFS. But the rewards of pacing,
used consistently, are greater control,
lower symptoms and, for some,
expansion of the energy envelope
and even recovery.
Physiological cost of walking in those with chronic fatigue syndrome
Interesting research showing those with CFS have physiological differences to those without...a verifiable symptom which I very much doubt would be changed in any way by CBT.
AddThis utility frame: "Conclusion: The physiological cost of walking was significantly greater for people with CFS compared with healthy subjects. The reasons for these higher energy demands for walking in those with CFS have yet to be fully elucidated."
AddThis utility frame: "Conclusion: The physiological cost of walking was significantly greater for people with CFS compared with healthy subjects. The reasons for these higher energy demands for walking in those with CFS have yet to be fully elucidated."
Thursday, October 22, 2009
Martin Pall on XMRV
Comments on XMRV, CFS and Fibromyalgia by Martin Pall
From Teewinot
Comment: These data apparently show that XMRV is not specific for CFS/ME but rather occurs in other disease states, as well as in some normals. My own view is that this makes it much more likely to be an opportunistic disease, caused by the changes in immune function and other properties of these diseases, rather than a primary cause. Specifically, the retrovirus, based on its DNA sequence, has its replication stimulated by NF-kappaB activity, an activity that is elevated as part of the NO/ONOO- cycle and has been reported to be elevated in CFS/ME. Furthermore, the low NK cell activity and other types of immune dysfunction, that occurs in these various diseases, may also be expected to stimulate the ability of the virus to maintain itself in disease sufferers.
In order to show that it is the primary cause of CFS/ME, it is necessary to show that XMRV follows Koch's postulates, but so far it does not apparently follow Koch's first postulate, which requires that it always occurs in people with the disease but does not occur in normals. The other three Koch's postulates have not been tested.
In contrast to that, we have a good fit to the five principles underlying the NO/ONOO- cycle for both CFS/ME and fibromyalgia. Because one can argue that the fit to these five principles serve very much like Koch's postulates for NO/ONOO- cycle disease, I will argue that we have a substantially more compelling case for a NO/ONOO- cycle etiology than we do for an XMRV infectious etiology for either CFS/ME or fibromyalgia.
That does not mean that XMRV is unimportant, however. Even if it turns out to be an opportunistic infection, like mycoplasma and HHV-6 are, it still may contribute to the etiology of the disease. And it still raises the question of whether we can cure cases of CFS/ME and fibromyalgia simply by normalizing the NO/ONOO- cycle as opposed to normalizing it and also using antivirals to depress XMRV and/or HHV-6. This is a question and I don't claim to have the answer to it, although my hope is that normalizing the cycle will also cure at least some of these infections, that may not be true.
There have been comments in the media to the effect that this finally shows that CFS/ME is physiological, not psychological. This is true, but this should have been obviously true anyway, at least six or seven years ago. Nevertheless the media coverage of CFS/ME obtained by Mikovits and her colleagues must be viewed as a true gift to those interested in extending public knowledge of this disease.
Martin L. (Marty) Pall
From Teewinot
Comment: These data apparently show that XMRV is not specific for CFS/ME but rather occurs in other disease states, as well as in some normals. My own view is that this makes it much more likely to be an opportunistic disease, caused by the changes in immune function and other properties of these diseases, rather than a primary cause. Specifically, the retrovirus, based on its DNA sequence, has its replication stimulated by NF-kappaB activity, an activity that is elevated as part of the NO/ONOO- cycle and has been reported to be elevated in CFS/ME. Furthermore, the low NK cell activity and other types of immune dysfunction, that occurs in these various diseases, may also be expected to stimulate the ability of the virus to maintain itself in disease sufferers.
In order to show that it is the primary cause of CFS/ME, it is necessary to show that XMRV follows Koch's postulates, but so far it does not apparently follow Koch's first postulate, which requires that it always occurs in people with the disease but does not occur in normals. The other three Koch's postulates have not been tested.
In contrast to that, we have a good fit to the five principles underlying the NO/ONOO- cycle for both CFS/ME and fibromyalgia. Because one can argue that the fit to these five principles serve very much like Koch's postulates for NO/ONOO- cycle disease, I will argue that we have a substantially more compelling case for a NO/ONOO- cycle etiology than we do for an XMRV infectious etiology for either CFS/ME or fibromyalgia.
That does not mean that XMRV is unimportant, however. Even if it turns out to be an opportunistic infection, like mycoplasma and HHV-6 are, it still may contribute to the etiology of the disease. And it still raises the question of whether we can cure cases of CFS/ME and fibromyalgia simply by normalizing the NO/ONOO- cycle as opposed to normalizing it and also using antivirals to depress XMRV and/or HHV-6. This is a question and I don't claim to have the answer to it, although my hope is that normalizing the cycle will also cure at least some of these infections, that may not be true.
There have been comments in the media to the effect that this finally shows that CFS/ME is physiological, not psychological. This is true, but this should have been obviously true anyway, at least six or seven years ago. Nevertheless the media coverage of CFS/ME obtained by Mikovits and her colleagues must be viewed as a true gift to those interested in extending public knowledge of this disease.
Martin L. (Marty) Pall
European Commission answers a question on Fibromyalgia and Chronic Fatigue Syndrome
They exist, hurrah!!!!
[One can see this answer in different European languages by going to:
http://www.europarl.europa.eu/sides/getAllAnswers.do?reference=E-2009-4347&l
Questions parlementaires
E-4347/09EN
Answer given by Ms Vassiliou
on behalf of the Commission
(1.10.2009)
As the Commission has indicated in its replies to written questions E
4898/08 by Mr Kilroy-Silk, E 6262/08 by Mr Popa and E-3734/09 by Mr Higgins
, the nature of the two disorders, Fibromyalgia and the Chronic Fatigue
Syndrome (CFS), have been, during years, controversially discussed. This
situation had given rise to major differences of opinion concerning the
ability of fibromyalgia and CFS patients to work, and to their entitlement
to social security benefits. In such context of scientific controversy, it
was difficult for the Commission to promote actions related to these
diseases. Nowadays it appears as an established and accepted fact that these
syndromes are genuine, severe and incapacitating disorders, even if
controversies remain, and even if there are still discussions in relation to
their most appropriate terminology and classification.
Consequently, the current version of the International Classification of
Diseases (ICD-10) includes Fibromyalgia (Code M79.7) and there is no reason
for refusal of treatment in any Member State on the basis of a supposed non
existence of the disease as in the past.
[One can see this answer in different European languages by going to:
http://www.europarl.europa.eu/sides/getAllAnswers.do?reference=E-2009-4347&l
Questions parlementaires
E-4347/09EN
Answer given by Ms Vassiliou
on behalf of the Commission
(1.10.2009)
As the Commission has indicated in its replies to written questions E
4898/08 by Mr Kilroy-Silk, E 6262/08 by Mr Popa and E-3734/09 by Mr Higgins
, the nature of the two disorders, Fibromyalgia and the Chronic Fatigue
Syndrome (CFS), have been, during years, controversially discussed. This
situation had given rise to major differences of opinion concerning the
ability of fibromyalgia and CFS patients to work, and to their entitlement
to social security benefits. In such context of scientific controversy, it
was difficult for the Commission to promote actions related to these
diseases. Nowadays it appears as an established and accepted fact that these
syndromes are genuine, severe and incapacitating disorders, even if
controversies remain, and even if there are still discussions in relation to
their most appropriate terminology and classification.
Consequently, the current version of the International Classification of
Diseases (ICD-10) includes Fibromyalgia (Code M79.7) and there is no reason
for refusal of treatment in any Member State on the basis of a supposed non
existence of the disease as in the past.
Wednesday, October 21, 2009
ME/CFS to be treatable?
AddThis utility frame:
"But the really good news is that if XMRV is the puppet-master of ME/CFS, it conceivably could be very treatable. Theoretically, more treatable than HIV. Lots of work to do.
The politics of ME/CFS are daunting. But now may be the time to forge ahead and get something done. Congratulations again to the authors and the Whittemores. It is time for the CDC and the NIH to be constructive and do some science....
But now things are different. Now I am not going to be too optimistic - I think XMRV is going to turn out to be the "cause" of ME/CFS, and I think treatments will be available from every family physician in America who accepts Medicare.
The question is whether this occurs next year or 20 years from now."
"But the really good news is that if XMRV is the puppet-master of ME/CFS, it conceivably could be very treatable. Theoretically, more treatable than HIV. Lots of work to do.
The politics of ME/CFS are daunting. But now may be the time to forge ahead and get something done. Congratulations again to the authors and the Whittemores. It is time for the CDC and the NIH to be constructive and do some science....
But now things are different. Now I am not going to be too optimistic - I think XMRV is going to turn out to be the "cause" of ME/CFS, and I think treatments will be available from every family physician in America who accepts Medicare.
The question is whether this occurs next year or 20 years from now."
Energy Index Point Score® (EIPS®)
About Chronic Fatigue Syndrome (CFS)
Chronic Fatigue Syndrome, also called Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephylomyelitis (ME), affects as many as 4 million people in the US alone, by CDC estimates, with a quarter disabled. It affects more Americans than AIDS, lung cancer and breast cancer combined. Research by the National Chronic Fatigue foundation found CFS sufferers average age of death to be as much as 20 years premature to the average American.
It is a multi-symptom disease, affecting the cardiovascular, immune and central nervous system. The most publicized symptom of the disease is the crippling fatigue, with most patients bed-ridden for all but a few short minutes or hours per day. To the naked eye these patients may look healthy, due to the "invisible" nature of the symptoms, many times causing confusion regarding its legitimacy.
http://www.treatmentcenterforcfs.com/energy_index_score/documents/EIPS.pdf
Energy Index Point Score® (EIPS®)
A Functional Capacity Measurement Tool
for Chronic Fatigue Syndrome (CFS) Patients
This is going on my cork board, great to use for showing doctors, consultants etc the extent of your disability
Chronic Fatigue Syndrome, also called Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephylomyelitis (ME), affects as many as 4 million people in the US alone, by CDC estimates, with a quarter disabled. It affects more Americans than AIDS, lung cancer and breast cancer combined. Research by the National Chronic Fatigue foundation found CFS sufferers average age of death to be as much as 20 years premature to the average American.
It is a multi-symptom disease, affecting the cardiovascular, immune and central nervous system. The most publicized symptom of the disease is the crippling fatigue, with most patients bed-ridden for all but a few short minutes or hours per day. To the naked eye these patients may look healthy, due to the "invisible" nature of the symptoms, many times causing confusion regarding its legitimacy.
http://www.treatmentcenterforcfs.com/energy_index_score/documents/EIPS.pdf
Energy Index Point Score® (EIPS®)
A Functional Capacity Measurement Tool
for Chronic Fatigue Syndrome (CFS) Patients
This is going on my cork board, great to use for showing doctors, consultants etc the extent of your disability
Re Universal Measurement tool for Chronic Fatigue Syndrome
Hope it is ok to repost it but it sounds like a valuable tool for both doctors and patients...
For Immediate Release
Contact:
Ann Cavanagh, Communications Director
Dr. A Martin Lerner CFS Foundation
+1 415.990.7150
Physician Challenges Chronic Fatigue Syndrome Community to Implement Universal Measurement Tool
• Universal tool for Chronic Fatigue Syndrome (CFS) will improve evaluation, treatment and legitimacy of disease
• Energy Index Point Score® (EIPS®) Measures Disability of CFS Patients
• EIPS® validated through research published In Vivo: The International Journal of Experimental and Clinical Pathophysiology and Drug Research
BEVERLY HILLS, MI – October 19, 2009 — Dr. A. Martin Lerner of the Treatment Center for Chronic Fatigue Syndrome (www.treatmentcenterforcfs.com) in Beverly Hills, MI issues an immediate call to action to the Chronic Fatigue Syndrome (CFS) community - in an effort to implement a universal measurement guideline for the treatment of CFS.
"The CFS community urgently requires a common measurement to evaluate and treat patients. Just as oncologists are able to determine treatment and prognosis based on the stage of cancer, an infectious disease physician can do the same for CFS," says Dr. A. Martin Lerner, Founder of The Treatment Center for CFS in Beverly Hills, MI.
"With measurement tools comes a common language for research, a universal standard for evaluation and treatment, and ultimately the legitimacy this disease deserves. I issue a call to action today, to physicians and patients alike, to join me in using the Energy Index Point Score® system for treatment of CFS."
Dr. A. Martin Lerner of The Treatment Center for CFS in Beverly Hills, MI has devoted the past 20 years of his life to research and treatment of CFS after recovering from the disease himself. During his efforts, Dr. Lerner realized the need for a measurement tool to evaluate the degree of disability for each patient, as well as track the success of each recovery. Without a benchmark, fatigue was too subjective and difficult to measure. From this need he created the Energy Index Point Score® (EIPS®), Registered, U.S. Patent and Trademark Office - a functional capacity measurement tool for CFS patients (reference attached PDF for the EIPS® system).
The EIPS® system defines the severity of patient fatigue, 0-10, through measurement of real-life situations including one's ability to sit, stand, be out of bed, work, perform housework, socialize, exercise. The EIPS® level is determined through discussion between the physician and patient. A change in EIPS® level of one is a significant change in health and lifestyle for the patient, as CFS symptoms decrease when the EIPS® increases. For full EIPS® tool visit http://www.treatmentcenterforcfs.com/energy_index_score/documents/EIPS.pdf
"Using the EIPS® as a benchmark for my practice and research has improved my ability to gauge illness as well as capture individuals' improvements. It is also an extremely helpful teaching tool for discussing parameters with a patient…what they can and can't do as they heal" says Dr. Lerner.
"As a CFS patient, the EIPS® has helped me understand what my short-term and long-term goals are and should be. For example, I know that I'll relapse again if I start to exercise before I'm an 8," says Carol Gill, CFS patient of the Treatment Center for CFS. "Before I started treatment with Dr. Lerner I didn't know how to manage my symptoms. I was up one month and down the next. With the use of his EIPS® management tool I've watched myself steadily improve over time."
The EIPS® has been validated as a measurement for disability in patients with CFS through a research effort published by In Vivo: The International Journal of Experimental and Clinical Pathophysiology and Drug Research, entitled "Validation of the Energy Index Point Score to Serially Measure the Degree of Disability in Patients with Chronic Fatigue Syndrome."
"In an effort to move forward in the treatment of this horrible affliction, we as doctors need to join together and assess patients uniformly. Just as the US government has assigned standard categories for storms in order to assess damages and prepare next steps, we as doctors who treat CFS need to rely on benchmarks for our patients in order to assess physical ailments and prepare our next steps," says Dr. Lerner.
For Immediate Release
Contact:
Ann Cavanagh, Communications Director
Dr. A Martin Lerner CFS Foundation
+1 415.990.7150
Physician Challenges Chronic Fatigue Syndrome Community to Implement Universal Measurement Tool
• Universal tool for Chronic Fatigue Syndrome (CFS) will improve evaluation, treatment and legitimacy of disease
• Energy Index Point Score® (EIPS®) Measures Disability of CFS Patients
• EIPS® validated through research published In Vivo: The International Journal of Experimental and Clinical Pathophysiology and Drug Research
BEVERLY HILLS, MI – October 19, 2009 — Dr. A. Martin Lerner of the Treatment Center for Chronic Fatigue Syndrome (www.treatmentcenterforcfs.com) in Beverly Hills, MI issues an immediate call to action to the Chronic Fatigue Syndrome (CFS) community - in an effort to implement a universal measurement guideline for the treatment of CFS.
"The CFS community urgently requires a common measurement to evaluate and treat patients. Just as oncologists are able to determine treatment and prognosis based on the stage of cancer, an infectious disease physician can do the same for CFS," says Dr. A. Martin Lerner, Founder of The Treatment Center for CFS in Beverly Hills, MI.
"With measurement tools comes a common language for research, a universal standard for evaluation and treatment, and ultimately the legitimacy this disease deserves. I issue a call to action today, to physicians and patients alike, to join me in using the Energy Index Point Score® system for treatment of CFS."
Dr. A. Martin Lerner of The Treatment Center for CFS in Beverly Hills, MI has devoted the past 20 years of his life to research and treatment of CFS after recovering from the disease himself. During his efforts, Dr. Lerner realized the need for a measurement tool to evaluate the degree of disability for each patient, as well as track the success of each recovery. Without a benchmark, fatigue was too subjective and difficult to measure. From this need he created the Energy Index Point Score® (EIPS®), Registered, U.S. Patent and Trademark Office - a functional capacity measurement tool for CFS patients (reference attached PDF for the EIPS® system).
The EIPS® system defines the severity of patient fatigue, 0-10, through measurement of real-life situations including one's ability to sit, stand, be out of bed, work, perform housework, socialize, exercise. The EIPS® level is determined through discussion between the physician and patient. A change in EIPS® level of one is a significant change in health and lifestyle for the patient, as CFS symptoms decrease when the EIPS® increases. For full EIPS® tool visit http://www.treatmentcenterforcfs.com/energy_index_score/documents/EIPS.pdf
"Using the EIPS® as a benchmark for my practice and research has improved my ability to gauge illness as well as capture individuals' improvements. It is also an extremely helpful teaching tool for discussing parameters with a patient…what they can and can't do as they heal" says Dr. Lerner.
"As a CFS patient, the EIPS® has helped me understand what my short-term and long-term goals are and should be. For example, I know that I'll relapse again if I start to exercise before I'm an 8," says Carol Gill, CFS patient of the Treatment Center for CFS. "Before I started treatment with Dr. Lerner I didn't know how to manage my symptoms. I was up one month and down the next. With the use of his EIPS® management tool I've watched myself steadily improve over time."
The EIPS® has been validated as a measurement for disability in patients with CFS through a research effort published by In Vivo: The International Journal of Experimental and Clinical Pathophysiology and Drug Research, entitled "Validation of the Energy Index Point Score to Serially Measure the Degree of Disability in Patients with Chronic Fatigue Syndrome."
"In an effort to move forward in the treatment of this horrible affliction, we as doctors need to join together and assess patients uniformly. Just as the US government has assigned standard categories for storms in order to assess damages and prepare next steps, we as doctors who treat CFS need to rely on benchmarks for our patients in order to assess physical ailments and prepare our next steps," says Dr. Lerner.
XMRV - the Potential For Change
http://aboutmecfs.org/blog/
by cort on October 19, 2009
This discovery has the potential for being a world changing event in every way for chronic fatigue syndrome patients. If it really works out - still an if - one almost has to think in inter-galactic terms to find an appropriate analogy of how different things could be five years from now. The illumination this type of discovery could cast would prompt researchers to travel down pathways we can’t even imagine right now. One wonders if any disease has had such a dramatic turnaround as this one may be in store for....
So what could happen if this finding really works out? What can we expect if this virus is shown to cause ME/CFS (and possibly other diseases ). Why not dream a little?
Funding explodes - Chronic Fatigue Syndrome is funded like a small disorder but it’s not a small disorder. It effects about 1 million people. Studies have shown that it causes about 25% of those affected to go on disability. It costs families about $20,000 a year. It costs the nation about $20 billion dollars a year in economic losses. That’s a lot of money even for a disease.
Yet this major disease is ranked about 210th in rank of the 215 diseases and conditions in NIH funding. It receives about 3 million dollars a year from the NIH. That’s chicken feed, chump change the NIH throws to keep the beggars quiet. It’s a rounding error for AIDs funding.
It’s definitely not disease solving money - you can’t solve any disease at three millon dollars a year. Ten million dollars is still peanuts and hardly worthy of mention. Consider that asthma causes much lower economic losses than ME/CFS yet gets 250 million dollars a year in federal funding. What this means is that there’s ample, ample room for this field to grow. Given its size and scope once this disease is validated think hundreds of millions of dollars A YEAR in funding once the field gets built up. That’s more funding in one year than this disease has gotten in twenty.
New Faces and New Places - Expect a lot of new faces from a lot of high places as the field starts to leverage the assets of a huge cadre of pathogen researchers.
Bye- Bye Office of Women’s Research Hello NIAID - The little CFS program that’s been slowly sinking in the backwater that’s called the Office of Research Of Women’s Research (ORWH) where its received no funding (that’s no funding!) gets moved back into the mighty billion dollar National Institute of Allergy and Infectious Diseases (NIAID).
CDC - After wiping the egg off their face expect things to change at the CDC. It’s hard to imagine them keeping around a virologist (Dr. Reeves) who not only missed the biggest virology in several decades but publicly trashed the finding and has had little interest in anything viral in this disorder. Let’s not forget the virologists at the CDC that will probably be salivating at the chance not only to unlock the mysteries of chronic fatigue syndrome but perhaps fibromyalgia, autism, prostate cancer and other disorders. If this works out the CDC, like any institution,will want its share of the glory. Look for it to throw its ace virologists into the fray.
Ampligen - Expect Ampligen to finally be approved by the FDA either now or not long from now. If not now expect a well designed, well-funded study (finally!) to quickly show the drug works and for it to get approved shortly after that.
Treatment Studies - expect a slew of treatment studies from drug manufacturers seeking to expand the market for their products.
Another Dream to Come True - Expect Annette Whittemore’s dream - of multiple WPI’s centered around the present (but larger) WPI - to come true.
Annette Whittemore Wins the Nobel Prize - OK, so that’s unrealistic but she, her husband, Dr. Peterson, Dr. Mikovits, Dr. Lombardi and the team should win our version of the Nobel Prize (whatever that is)
Right now there’s still alot of hard work ahead and critical questions to answer and if it does happen it will take time but there’s reason to believe it could. Researchers often, at least in public, play down expectations but the WPI has not. Both in their public announcements and even more so behind the scenes they are very confident in their findings.
by cort on October 19, 2009
This discovery has the potential for being a world changing event in every way for chronic fatigue syndrome patients. If it really works out - still an if - one almost has to think in inter-galactic terms to find an appropriate analogy of how different things could be five years from now. The illumination this type of discovery could cast would prompt researchers to travel down pathways we can’t even imagine right now. One wonders if any disease has had such a dramatic turnaround as this one may be in store for....
So what could happen if this finding really works out? What can we expect if this virus is shown to cause ME/CFS (and possibly other diseases ). Why not dream a little?
Funding explodes - Chronic Fatigue Syndrome is funded like a small disorder but it’s not a small disorder. It effects about 1 million people. Studies have shown that it causes about 25% of those affected to go on disability. It costs families about $20,000 a year. It costs the nation about $20 billion dollars a year in economic losses. That’s a lot of money even for a disease.
Yet this major disease is ranked about 210th in rank of the 215 diseases and conditions in NIH funding. It receives about 3 million dollars a year from the NIH. That’s chicken feed, chump change the NIH throws to keep the beggars quiet. It’s a rounding error for AIDs funding.
It’s definitely not disease solving money - you can’t solve any disease at three millon dollars a year. Ten million dollars is still peanuts and hardly worthy of mention. Consider that asthma causes much lower economic losses than ME/CFS yet gets 250 million dollars a year in federal funding. What this means is that there’s ample, ample room for this field to grow. Given its size and scope once this disease is validated think hundreds of millions of dollars A YEAR in funding once the field gets built up. That’s more funding in one year than this disease has gotten in twenty.
New Faces and New Places - Expect a lot of new faces from a lot of high places as the field starts to leverage the assets of a huge cadre of pathogen researchers.
Bye- Bye Office of Women’s Research Hello NIAID - The little CFS program that’s been slowly sinking in the backwater that’s called the Office of Research Of Women’s Research (ORWH) where its received no funding (that’s no funding!) gets moved back into the mighty billion dollar National Institute of Allergy and Infectious Diseases (NIAID).
CDC - After wiping the egg off their face expect things to change at the CDC. It’s hard to imagine them keeping around a virologist (Dr. Reeves) who not only missed the biggest virology in several decades but publicly trashed the finding and has had little interest in anything viral in this disorder. Let’s not forget the virologists at the CDC that will probably be salivating at the chance not only to unlock the mysteries of chronic fatigue syndrome but perhaps fibromyalgia, autism, prostate cancer and other disorders. If this works out the CDC, like any institution,will want its share of the glory. Look for it to throw its ace virologists into the fray.
Ampligen - Expect Ampligen to finally be approved by the FDA either now or not long from now. If not now expect a well designed, well-funded study (finally!) to quickly show the drug works and for it to get approved shortly after that.
Treatment Studies - expect a slew of treatment studies from drug manufacturers seeking to expand the market for their products.
Another Dream to Come True - Expect Annette Whittemore’s dream - of multiple WPI’s centered around the present (but larger) WPI - to come true.
Annette Whittemore Wins the Nobel Prize - OK, so that’s unrealistic but she, her husband, Dr. Peterson, Dr. Mikovits, Dr. Lombardi and the team should win our version of the Nobel Prize (whatever that is)
Right now there’s still alot of hard work ahead and critical questions to answer and if it does happen it will take time but there’s reason to believe it could. Researchers often, at least in public, play down expectations but the WPI has not. Both in their public announcements and even more so behind the scenes they are very confident in their findings.
Saturday, October 17, 2009
R.E.S.C.I.N.D.
Strong words indeed!
R.E.S.C.I.N.D.: "Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the
Cause of Fatigue Syndrome?” - posted online Oct 15, 2009"
RESCIND would like to emphasize what we feel are probably the two most powerful quotes on record in M.E. (C.F.S.) history...
Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the
Cause of Fatigue Syndrome?” - posted online Oct 15, 2009
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/
"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V.
patients. My H.I.V. patients for the most part are hale and hearty thanks to
three decades of intense and excellent research and billions of dollars
invested. Many of my C.F.S. patients, on the other hand, are terribly ill
and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I
had to choose between the two illnesses (in 2009) I would rather have H.I.V."
Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name
Change Movement
http://www.rescindinc.org/history.htm
Dr. Shelekov looked puzzled and maybe a little skeptical.
But Dr. Marc Loveless, sitting next time to him said,
"Dr. Shelekov, this man (meaning me) is telling you the truth.
I have treated more than 2500 AIDS and CFS patients over
the past 12 years. and my CFS patients are MORE sick and
MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!"
I immediately said to Dr. Loveless that "YOU have to use
that line in every speech you give on this illness for the
rest of your life!" (in 1994, Dr. Loveless gave this same
testimony under oath to the US Congress).
R.E.S.C.I.N.D.: "Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the
Cause of Fatigue Syndrome?” - posted online Oct 15, 2009"
RESCIND would like to emphasize what we feel are probably the two most powerful quotes on record in M.E. (C.F.S.) history...
Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the
Cause of Fatigue Syndrome?” - posted online Oct 15, 2009
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/
"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V.
patients. My H.I.V. patients for the most part are hale and hearty thanks to
three decades of intense and excellent research and billions of dollars
invested. Many of my C.F.S. patients, on the other hand, are terribly ill
and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I
had to choose between the two illnesses (in 2009) I would rather have H.I.V."
Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name
Change Movement
http://www.rescindinc.org/history.htm
Dr. Shelekov looked puzzled and maybe a little skeptical.
But Dr. Marc Loveless, sitting next time to him said,
"Dr. Shelekov, this man (meaning me) is telling you the truth.
I have treated more than 2500 AIDS and CFS patients over
the past 12 years. and my CFS patients are MORE sick and
MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!"
I immediately said to Dr. Loveless that "YOU have to use
that line in every speech you give on this illness for the
rest of your life!" (in 1994, Dr. Loveless gave this same
testimony under oath to the US Congress).
Friday, October 16, 2009
The ME Association - MEA statement on retrovirus XMRV and ME/CFS
The ME Association - MEA statement on retrovirus XMRV and ME/CFS: "ME ASSOCIATION POSITION
These are clearly important research findings that could help with both the diagnosis and management of ME/CFS, and we congratulate all those involved.
However, a number of questions still have to be answered before anyone can conclude that this virus plays a significant role in either the cause, transmission, clinical assessment or management of ME/CFS. Much more epidemiology and laboratory work now needs to be done to answer the essential points set out below:
Carrying out further and larger studies using different populations of people with ME/CFS, including people at different stages of the illness (to see if the virus is present in the same percentages in both early and late cases) and in all degrees of severity.
Using different international laboratories to test for evidence of the virus.
Assessing what, if any, correlation there is between the presence of this virus and (a) severity of symptoms, (b) a clear infectious onset with a known infection, and (c) various other factors involved in sub-grouping of people under the ME/CFS umbrella.
Assessing to what extent this virus is also present in other chronic conditions, especially those such as multiple sclerosis and lymphoma where viral infections have been implicated as a causative factor.
Assessing whether this virus is acting as a benign marker of disease or immune dysfunction, or is a 'passenger virus', or whether it has a role in the actual disease process and development of symptoms.
Investigating whether the presence of the virus in healthy people acts as a predisposing factor in the development of ME/CFS (possibly when another infective trigger appears) and/or prostate cancer - rather than being involved in th"
These are clearly important research findings that could help with both the diagnosis and management of ME/CFS, and we congratulate all those involved.
However, a number of questions still have to be answered before anyone can conclude that this virus plays a significant role in either the cause, transmission, clinical assessment or management of ME/CFS. Much more epidemiology and laboratory work now needs to be done to answer the essential points set out below:
Carrying out further and larger studies using different populations of people with ME/CFS, including people at different stages of the illness (to see if the virus is present in the same percentages in both early and late cases) and in all degrees of severity.
Using different international laboratories to test for evidence of the virus.
Assessing what, if any, correlation there is between the presence of this virus and (a) severity of symptoms, (b) a clear infectious onset with a known infection, and (c) various other factors involved in sub-grouping of people under the ME/CFS umbrella.
Assessing to what extent this virus is also present in other chronic conditions, especially those such as multiple sclerosis and lymphoma where viral infections have been implicated as a causative factor.
Assessing whether this virus is acting as a benign marker of disease or immune dysfunction, or is a 'passenger virus', or whether it has a role in the actual disease process and development of symptoms.
Investigating whether the presence of the virus in healthy people acts as a predisposing factor in the development of ME/CFS (possibly when another infective trigger appears) and/or prostate cancer - rather than being involved in th"
Wednesday, October 14, 2009
Treating Chronic Fatigue Syndrome (ME/CFS): XMRV
The scientific evidence that a retrovirus is implicated in CFS opens a new world of possibilities for so many people. Scientists can now begin the important work of translating this discovery into medical care for individuals with XMRV related diseases.” Annette Whittemore
Treatment information is still decidedly sketchy. At the Reno Conference Annette Whittemore evoked the possibility that the Institute was on the road to uncovering unusual drugs that would prove helpful and indeed the Institutes uncovery of similar immune system dysfunctions in ME/CFS patients and cancer patients opened the door to anti-cancer drugs.
Now the discovery of a retrovirus opens the door to anti-retroviral drugs. Some of these drugs come, however, with a considerable downside - potentially devastating side effects - and may offer a viable solution only for a few. The WPI will be assessing the effectiveness of antiretroviral drugs in some ME/CFS patients. Dr. LeGrice of HIV/AIDS and Cancer Virology at the NIH stated that despite its retroviral roots XMRV is different enough from HIV that new kinds of drug will be needed.
The WPI has displayed, however, considerable optimism regarding the creation of new drugs to treat this infection stating One wonders if their optimism derives from the fact that the XMRV virus is much more primitive than the HIV retrovirus.
link
Treatment information is still decidedly sketchy. At the Reno Conference Annette Whittemore evoked the possibility that the Institute was on the road to uncovering unusual drugs that would prove helpful and indeed the Institutes uncovery of similar immune system dysfunctions in ME/CFS patients and cancer patients opened the door to anti-cancer drugs.
Now the discovery of a retrovirus opens the door to anti-retroviral drugs. Some of these drugs come, however, with a considerable downside - potentially devastating side effects - and may offer a viable solution only for a few. The WPI will be assessing the effectiveness of antiretroviral drugs in some ME/CFS patients. Dr. LeGrice of HIV/AIDS and Cancer Virology at the NIH stated that despite its retroviral roots XMRV is different enough from HIV that new kinds of drug will be needed.
The WPI has displayed, however, considerable optimism regarding the creation of new drugs to treat this infection stating One wonders if their optimism derives from the fact that the XMRV virus is much more primitive than the HIV retrovirus.
link
"Has science found the cause of ME?" independent
Sponsored Features Sliding Teaser - Narrow:
Hope at last for ME sufferers
Thank you, thank you, thank you for your report headlined "Has science found the cause of ME?" (9 October). This is the news that thousands of ME sufferers and their families have been awaiting for so long.
I was trying to summon up the energy to make some breakfast when my eye caught the headline, and I felt hope, almost euphoria. After 17 years of ME, with its attendant stripping away of what we could call a normal life, I hope this research will lead to a cure, or at least maybe the cynics, sceptics, and downright hostile, not least of these the medical profession, will start to treat sufferers seriously. Graded exercise therapy and cognitive behaviour therapy need to be re-evaluated.
How good it was, also, to read an enlightened editorial on the subject of ME, which said it like it is.
Rosey Lowry
Bury St Edmunds, Suffolk
The news of a possible scientific breakthrough in understanding ME is most welcome, though it needs to be treated with caution until replicated. If the research does prove to be a breakthrough, it will not be before time. As your leader so rightly points out, people with ME have suffered the most shameful neglect for far too long.
Action for ME has been calling for research into this disabling condition for over 25 years. The barrier has always been the prevalent but unproven theory that ME was psychosomatic. Now, with the publication of the US data, it is time to cast off the past and tackle research with the whole-heartedness such a debilitating and life-destroying illness deserves. It is not just money that is needed, but a new mindset on the part of doctors, researchers and government alike.
Clare Francis
President, Action for ME
London W8
What happens now that 95 per cent of the study group of myalgic encephalomyelitis sufferers have been found to have antibodies to the highly contagious retrovirus XMRV, and 65 per cent tested positively for it?
Will the UK medical authorities take this seriously enough to move quickly and test and where appropriate give currently available antiretrovirals to the quarter of a million ME sufferers, as they now do with HIV and Aids sufferers? Will they at last acknowledge just how very ill and at risk of premature death many ME sufferers are? Will they advise health workers on how to avoid contamination from retrovirus XMRV?
Or will they, as seems more likely, continue to give all research and treatment funding to the psychiatrists who have taken all ME research and treatment funding for over two decades, while pretending that ME is imaginary? Will they continue to mix ME sufferers up with sufferers of mental disorders in their ridiculously named "chronic fatigue" clinics? Will they continue the daft practice of offering only graded exercise, which makes sufferers worse, and cognitive behaviour therapy, which does nothing?
This 58-year-old sufferer of severe ME for the past 21 years would like some answers. It seems there is an epidemic of a serious contagious physical illness in the UK that the medical authorities have been ignoring for far too long.
Hilary Patten
Frome, Somerset
Hope at last for ME sufferers
Thank you, thank you, thank you for your report headlined "Has science found the cause of ME?" (9 October). This is the news that thousands of ME sufferers and their families have been awaiting for so long.
I was trying to summon up the energy to make some breakfast when my eye caught the headline, and I felt hope, almost euphoria. After 17 years of ME, with its attendant stripping away of what we could call a normal life, I hope this research will lead to a cure, or at least maybe the cynics, sceptics, and downright hostile, not least of these the medical profession, will start to treat sufferers seriously. Graded exercise therapy and cognitive behaviour therapy need to be re-evaluated.
How good it was, also, to read an enlightened editorial on the subject of ME, which said it like it is.
Rosey Lowry
Bury St Edmunds, Suffolk
The news of a possible scientific breakthrough in understanding ME is most welcome, though it needs to be treated with caution until replicated. If the research does prove to be a breakthrough, it will not be before time. As your leader so rightly points out, people with ME have suffered the most shameful neglect for far too long.
Action for ME has been calling for research into this disabling condition for over 25 years. The barrier has always been the prevalent but unproven theory that ME was psychosomatic. Now, with the publication of the US data, it is time to cast off the past and tackle research with the whole-heartedness such a debilitating and life-destroying illness deserves. It is not just money that is needed, but a new mindset on the part of doctors, researchers and government alike.
Clare Francis
President, Action for ME
London W8
What happens now that 95 per cent of the study group of myalgic encephalomyelitis sufferers have been found to have antibodies to the highly contagious retrovirus XMRV, and 65 per cent tested positively for it?
Will the UK medical authorities take this seriously enough to move quickly and test and where appropriate give currently available antiretrovirals to the quarter of a million ME sufferers, as they now do with HIV and Aids sufferers? Will they at last acknowledge just how very ill and at risk of premature death many ME sufferers are? Will they advise health workers on how to avoid contamination from retrovirus XMRV?
Or will they, as seems more likely, continue to give all research and treatment funding to the psychiatrists who have taken all ME research and treatment funding for over two decades, while pretending that ME is imaginary? Will they continue to mix ME sufferers up with sufferers of mental disorders in their ridiculously named "chronic fatigue" clinics? Will they continue the daft practice of offering only graded exercise, which makes sufferers worse, and cognitive behaviour therapy, which does nothing?
This 58-year-old sufferer of severe ME for the past 21 years would like some answers. It seems there is an epidemic of a serious contagious physical illness in the UK that the medical authorities have been ignoring for far too long.
Hilary Patten
Frome, Somerset
CFS in the news
Advertisement: "In the past 12 months, worldwide there have been 261 articles published in the peer-reviewed medical literature about chronic fatigue syndrome (CFS); there are 4,655 articles about CFS listed in PubMed.
The article published last week in the journal Science linking CFS and xenotropic murine retrovirus (XMRV) has received sustained international media attention. Even with a discovery as important as this one, it will be subject to various interpretations and will likely prompt numerous attempts to replicate the finding, the basis of “the scientific method.”
“Understanding Risk: What Do Those Headlines Really Mean?”
Every day in the newspaper or on television we see stories about new medical findings. Perhaps we hear that a certain drug causes a 300% or three-fold increase in strokes. That’s a large increase—it sounds scary. But, if you know that in every 10,000 people not taking the drug, there are two strokes, then a three-fold increase really only means six more strokes. Maybe that’s not quite so frightening. It’s also confusing that sometimes stories seem to report opposite results—a new vaccine prevents a devastating infection, or it doesn’t. How are we to make sense of such stories? How do we know what to believe?
Fact sheet from the
National Institute of AgingThis fact sheet (http://www.nia.nih.gov/Hea"
The article published last week in the journal Science linking CFS and xenotropic murine retrovirus (XMRV) has received sustained international media attention. Even with a discovery as important as this one, it will be subject to various interpretations and will likely prompt numerous attempts to replicate the finding, the basis of “the scientific method.”
“Understanding Risk: What Do Those Headlines Really Mean?”
Every day in the newspaper or on television we see stories about new medical findings. Perhaps we hear that a certain drug causes a 300% or three-fold increase in strokes. That’s a large increase—it sounds scary. But, if you know that in every 10,000 people not taking the drug, there are two strokes, then a three-fold increase really only means six more strokes. Maybe that’s not quite so frightening. It’s also confusing that sometimes stories seem to report opposite results—a new vaccine prevents a devastating infection, or it doesn’t. How are we to make sense of such stories? How do we know what to believe?
Fact sheet from the
National Institute of AgingThis fact sheet (http://www.nia.nih.gov/Hea"
Saturday, October 10, 2009
Does a virus cause ME?
Does a virus cause ME?: "The front page of today’s Independent asks whether scientists have found the cause of ME (myalgic encephalitis), also known as chronic fatigue syndrome (CFS). The newspaper reported that researchers have found a “strong link” with a retrovirus called XMRV.
This study compared blood samples from 101 CFS patients with samples from 218 people without it. It found evidence of the XMRV virus in about two-thirds of the people with CFS and less than 4% of people without the disease.
These findings alone do not prove that the virus causes CFS, because they do not show whether the infection occurred before or after CFS developed. The research paper is cautious in its conclusions, saying that XMRV “may” be a contributing factor to CFS, but the opposite may also be true: CFS may make people more susceptible to infection with this virus.
Despite these limitations, these findings will be of interest to the research community, doctors, and patients. Larger studies and research that establishes whether the XMRV infection occurs before or after the onset of CFS will be needed before any conclusions can be drawn."
This study compared blood samples from 101 CFS patients with samples from 218 people without it. It found evidence of the XMRV virus in about two-thirds of the people with CFS and less than 4% of people without the disease.
These findings alone do not prove that the virus causes CFS, because they do not show whether the infection occurred before or after CFS developed. The research paper is cautious in its conclusions, saying that XMRV “may” be a contributing factor to CFS, but the opposite may also be true: CFS may make people more susceptible to infection with this virus.
Despite these limitations, these findings will be of interest to the research community, doctors, and patients. Larger studies and research that establishes whether the XMRV infection occurs before or after the onset of CFS will be needed before any conclusions can be drawn."
Friday, October 09, 2009
Whittemore Peterson Institute - XMRV
“This is the breakthrough that we have been hoping for. Now we have
scientific proof that this infectious agent is a significant factor in
ME/CFS,” said Annette Whittemore, founder and president of WPI and
mother of a ME/CFS patient. “Patients and their doctors will soon have
a blood test to verify their diagnosis and provide the answers that
they’ve been seeking.”
Daniel Peterson, M.D., medical director of WPI added, “Patients with
ME/CFS (XAND) deal with a myriad of health issues as their quality of
life declines. I’m excited about the possibility of providing patients
who are positive for XMRV a definitive diagnosis, and hopefully very
soon, a range of effective treatments options.”
Information relating to XMRV associated neuroimmune disease can be
found at www.wpinstitute.org. Those with XAND (ME/CFS) and/or
fibromyalgia, interested in participating in research studies to
further the development of diagnostic tests, should complete the
questionnaire available at www.wpinstitute.org.
The Center for Molecular Medicine, now under construction, at the
University of Nevada School of Medicine in Reno, is the future home of
the Whittemore Peterson Institute.
“We’re excited about the opening of our new facility next summer,
which will not only add thousands of square feet to our existing
laboratory space, but will also provide new space for comprehensive
patient care,” added Whittemore.
Whittemore Peterson Institute - XMRV: "We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.
This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.
Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.
As National Academy of Sciences member and expert retrovirologist, John Coffin wrote in the commentary accompanying our landmark publication in Science 'One New Virus-How many Old Diseases'. We look forward to translating this discovery into treatment options!"
scientific proof that this infectious agent is a significant factor in
ME/CFS,” said Annette Whittemore, founder and president of WPI and
mother of a ME/CFS patient. “Patients and their doctors will soon have
a blood test to verify their diagnosis and provide the answers that
they’ve been seeking.”
Daniel Peterson, M.D., medical director of WPI added, “Patients with
ME/CFS (XAND) deal with a myriad of health issues as their quality of
life declines. I’m excited about the possibility of providing patients
who are positive for XMRV a definitive diagnosis, and hopefully very
soon, a range of effective treatments options.”
Information relating to XMRV associated neuroimmune disease can be
found at www.wpinstitute.org. Those with XAND (ME/CFS) and/or
fibromyalgia, interested in participating in research studies to
further the development of diagnostic tests, should complete the
questionnaire available at www.wpinstitute.org.
The Center for Molecular Medicine, now under construction, at the
University of Nevada School of Medicine in Reno, is the future home of
the Whittemore Peterson Institute.
“We’re excited about the opening of our new facility next summer,
which will not only add thousands of square feet to our existing
laboratory space, but will also provide new space for comprehensive
patient care,” added Whittemore.
Whittemore Peterson Institute - XMRV: "We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.
This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.
Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.
As National Academy of Sciences member and expert retrovirologist, John Coffin wrote in the commentary accompanying our landmark publication in Science 'One New Virus-How many Old Diseases'. We look forward to translating this discovery into treatment options!"
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Abstract:
Chronic fatigue syndrome (CFS) is a debilitating disease
of unknown etiology that is estimated to affect 17 million
people worldwide. Studying peripheral blood
mononuclear cells (PBMCs) from CFS patients, we
identified DNA from a human gammaretrovirus,
xenotropic murine leukemia virus-related virus (XMRV),
in 68 of 101 patients (67%) compared to 8 of 218 (3.7%)
healthy controls. Cell culture experiments revealed that
patient-derived XMRV is infectious and that both cellassociated
and cell-free transmission of the virus are
possible. Secondary viral infections were established in
uninfected primary lymphocytes and indicator cell lines
following exposure to activated PBMCs, B cells, T cells, or
plasma derived from CFS patients. These findings raise
the possibility that XMRV may be a contributing factor in
the pathogenesis of CFS.
Journal: Science [Published on-line as a Sciencexpess Report: October 8, 2009]
Authors: Vincent C. Lombardi [1*], Francis W. Ruscetti [2*],
Jaydip Das Gupta [3], Max A. Pfost [1], Kathryn S. Hagen [1],
Daniel L. Peterson [1],Sandra K. Ruscetti [4], Rachel K. Bagni [5],
Cari Petrow-Sadowski [6], Bert Gold [2], Michael Dean [2] Robert
H. Silverman [3], Judy A. Mikovits [1†]
Chronic fatigue syndrome (CFS) is a debilitating disease
of unknown etiology that is estimated to affect 17 million
people worldwide. Studying peripheral blood
mononuclear cells (PBMCs) from CFS patients, we
identified DNA from a human gammaretrovirus,
xenotropic murine leukemia virus-related virus (XMRV),
in 68 of 101 patients (67%) compared to 8 of 218 (3.7%)
healthy controls. Cell culture experiments revealed that
patient-derived XMRV is infectious and that both cellassociated
and cell-free transmission of the virus are
possible. Secondary viral infections were established in
uninfected primary lymphocytes and indicator cell lines
following exposure to activated PBMCs, B cells, T cells, or
plasma derived from CFS patients. These findings raise
the possibility that XMRV may be a contributing factor in
the pathogenesis of CFS.
Journal: Science [Published on-line as a Sciencexpess Report: October 8, 2009]
Authors: Vincent C. Lombardi [1*], Francis W. Ruscetti [2*],
Jaydip Das Gupta [3], Max A. Pfost [1], Kathryn S. Hagen [1],
Daniel L. Peterson [1],Sandra K. Ruscetti [4], Rachel K. Bagni [5],
Cari Petrow-Sadowski [6], Bert Gold [2], Michael Dean [2] Robert
H. Silverman [3], Judy A. Mikovits [1†]
Xenotropic murine leukemia virus-related virus - Wikipedia, the free encyclopedia
Xenotropic murine leukemia virus-related virus - Wikipedia, the free encyclopedia: "Xenotropic murine leukemia virus-related virus, sometimes shortened to Xenotropic MuLV-related virus (XMRV) is a newly identified and provisionally named gammaretrovirus which may be involved in the pathology of familial prostate cancer and chronic fatigue syndrome. Its name refers to its similarity to xenotropic murine leukemia viruses, although it does show some substantial differences. It is thought to be linked to prostate cancer by ribonuclease L, part of the cell’s natural defense against viruses. When activated, RNase L destroys RNA in an effort to halt viral gene expression. R462Q is a mutation that results in a decreased level of RNase L function, and this mutation’s presence in prostate tumors shows a strong correlation with the presence of XMRV.
The virus was discovered in cancerous prostate tissues using a microarray containing samples of genetic material from over 1000 viruses. The screen revealed the presence of a gammaretrovirus in a substantial number of the homozygous R462Q cells, but very few of the heterozygous or wild type cells. An expanded screen showed the virus present in 40% of men homozygous for R462Q and only 1.5% of those not, and also demonstrated that each case showed the same virus. [1]In another study, the viral genome was reconstructed from prostate mRNA and used to infect prostate tissues in vitro. The researchers were able to show that RNase L deficient lines were more susceptible to infection.[2] These data do not necessarily show that XMRV causes prostate cancer, but they do show that RNase L deficiency makes prostate tissue more susceptible to the virus. This in turn suggests the possibility of a link between the virus and the disease.
XMRV is even more strongly implicated in chronic fatigue syndrome: people with CFS are 54 times more lik"
The virus was discovered in cancerous prostate tissues using a microarray containing samples of genetic material from over 1000 viruses. The screen revealed the presence of a gammaretrovirus in a substantial number of the homozygous R462Q cells, but very few of the heterozygous or wild type cells. An expanded screen showed the virus present in 40% of men homozygous for R462Q and only 1.5% of those not, and also demonstrated that each case showed the same virus. [1]In another study, the viral genome was reconstructed from prostate mRNA and used to infect prostate tissues in vitro. The researchers were able to show that RNase L deficient lines were more susceptible to infection.[2] These data do not necessarily show that XMRV causes prostate cancer, but they do show that RNase L deficiency makes prostate tissue more susceptible to the virus. This in turn suggests the possibility of a link between the virus and the disease.
XMRV is even more strongly implicated in chronic fatigue syndrome: people with CFS are 54 times more lik"
Thursday, September 10, 2009
Symptoms then and now - dairy free
Going dairy free over 10 years ago was a turning point for me, before that I was sick every day went to the toilet about 10 tines a day with the runs, was under 8 stone and too tired to hold a hairdryer or climb the stairs plus awful joint and muscle pain, migraines, real trouble thinking and remembering, recurring infections etc etc
....
The terrible gastric problems improved but I have to be careful, I avoid additives and processed foods, eat very little bread, pastry etc..
Along the way my GP consulted the rheumatology specialist & prescibed nortryptaline which helped me sleep much better.
I have to say if your wife gets a diagnosis of fibromyalgia or chronic fatigue syndrome it is hard to live with as it is mainly considered to be "MUPS" or medically unexplained symptoms and symptoms will probably be treated one by one rather than as part of one syndrome unless she is very very lucky and has a GP who "believes"...
I still have to pace myself very carefully or I wake up feeling like I have swine flu times 10. In fact I am still suffering today from just the extra 1/2 hour picking sloes
....
The terrible gastric problems improved but I have to be careful, I avoid additives and processed foods, eat very little bread, pastry etc..
Along the way my GP consulted the rheumatology specialist & prescibed nortryptaline which helped me sleep much better.
I have to say if your wife gets a diagnosis of fibromyalgia or chronic fatigue syndrome it is hard to live with as it is mainly considered to be "MUPS" or medically unexplained symptoms and symptoms will probably be treated one by one rather than as part of one syndrome unless she is very very lucky and has a GP who "believes"...
I still have to pace myself very carefully or I wake up feeling like I have swine flu times 10. In fact I am still suffering today from just the extra 1/2 hour picking sloes
Monday, August 24, 2009
The crippling illness that GPs refuse to diagnose | Mail Online
The crippling illness that GPs refuse to diagnose | Mail Online:
"For a long time many doctors saw fibromyalgia as largely a psychological problem, but ten years ago it was recognised as a genuine medical condition by the World Health Organisation. Yet some medics remain sceptical. ‘The problem is that many of the symptoms of fibromyalgia are vague,’ explains Dr Heike Romer, a consultant in pain management in the NHS and at the Spire Liverpool Hospital. ‘Often GPs treat patients’ symptoms separately, rather than looking at them as a group and realising they indicate fibromyalgia. And because these symptoms aren’t life-threatening and the patient isn’t turning green, they are seen as a malingerer.’
Dr Tom Gilhooly, a GP from Glasgow who has worked with fibromyalgia patients for 20 years, believes the current approach to treating the condition is inadequate. ‘Often the patients I see are on a cocktail of drugs. Instead of handing out drugs for the symptoms, we have to get to the underlying cause of the problem.’ Dr Gilhooly believes this cause is an immune system response, perhaps to a virus or trauma - such as an accident - or simply to the body being pushed to its limit."
"For a long time many doctors saw fibromyalgia as largely a psychological problem, but ten years ago it was recognised as a genuine medical condition by the World Health Organisation. Yet some medics remain sceptical. ‘The problem is that many of the symptoms of fibromyalgia are vague,’ explains Dr Heike Romer, a consultant in pain management in the NHS and at the Spire Liverpool Hospital. ‘Often GPs treat patients’ symptoms separately, rather than looking at them as a group and realising they indicate fibromyalgia. And because these symptoms aren’t life-threatening and the patient isn’t turning green, they are seen as a malingerer.’
Dr Tom Gilhooly, a GP from Glasgow who has worked with fibromyalgia patients for 20 years, believes the current approach to treating the condition is inadequate. ‘Often the patients I see are on a cocktail of drugs. Instead of handing out drugs for the symptoms, we have to get to the underlying cause of the problem.’ Dr Gilhooly believes this cause is an immune system response, perhaps to a virus or trauma - such as an accident - or simply to the body being pushed to its limit."
Wednesday, August 19, 2009
‘Untruths’ about NHS system of healthcare -Times Online
‘Untruths’ about NHS system of healthcare -Times Online: "Sir, The quarter of a million sufferers of myalgic encephalomyelitis (ME) in this country, who can access no effective NHS treatment for their physical illness, might agree with Mr Hannan in that they would not wish their NHS “care” on anybody.
ME has been classified as a physical, neurological illness (alongside MS and Parkinson’s) by the World Health Organisation since 1969. Instead of receiving biomedical treatment, ME sufferers are mixed up with sufferers of other fatigue-causing conditions, including mental ones, under the meaningless umbrella term “chronic fatigue syndrome”. In the UK no other neurological illness is treated solely by psychological interventions.
All UK taxpayers’ research and treatment millions have gone to the psychiatric profession that insist, against all scientific evidence, that it is an “abnormal illness belief”. No funding has ever been allotted to developing a diagnostic test. The parliamentary Gibson report recommended that these psychiatrists be investigated for a possible conflict of interest in also working for large insurance companies. This has never been done. Is healthcare here also, in President Obama’s words, “working better for the insurance companies” than for ME sufferers?
H. Patten
Frome, Somerset"
ME has been classified as a physical, neurological illness (alongside MS and Parkinson’s) by the World Health Organisation since 1969. Instead of receiving biomedical treatment, ME sufferers are mixed up with sufferers of other fatigue-causing conditions, including mental ones, under the meaningless umbrella term “chronic fatigue syndrome”. In the UK no other neurological illness is treated solely by psychological interventions.
All UK taxpayers’ research and treatment millions have gone to the psychiatric profession that insist, against all scientific evidence, that it is an “abnormal illness belief”. No funding has ever been allotted to developing a diagnostic test. The parliamentary Gibson report recommended that these psychiatrists be investigated for a possible conflict of interest in also working for large insurance companies. This has never been done. Is healthcare here also, in President Obama’s words, “working better for the insurance companies” than for ME sufferers?
H. Patten
Frome, Somerset"
Tuesday, August 18, 2009
The Life Span Institute at the University of Kansas
The Life Span Institute at the University of Kansas: "Chronic Fatigue syndrome, also called chronic fatigue and immune dysfunction syndrome, describes a serious chronic condition in which individuals experience six or more months of fatigue accompanied by physical and cognitive symptoms. Do not use terms such as Yuppie Flu, malingering, and hypochondriasis as they are pejorative, imply personality disorders, and are not scientifically supportable. Say person with chronic fatigue syndrome."
Sunday, August 16, 2009
I'd rather have cancer, says Alex Wilson-Glab | National News | News.com.au
I'd rather have cancer, says Alex Wilson-Glab | National News | News.com.au: "Alex has muscle pain, fevers, chills, nausea, severe fatigue and can barely walk from bed to the bathroom.
Alex wants to raise awareness about CFS, which was once known as the 'yuppie flu', saying it is a recognised medical condition and not a psychological disorder.
Alex, who sometimes needs a wheelchair, said one person had died from CFS in Australia and she fears she will be next. 'I don't think I will ever recover completely. It would be better to die because people would listen,' she said.
Aspiring lawyer Alex is doing one VCE subject at Lowther Hall but is so sick she can't attend school.
She will be admitted to the Royal Children's Hospital on Monday for monitoring.
Her mother Jeannie, 56, said the VCAA was refusing to give Alex extra time for her VCE exams. She was furious the medical world didn't recognise the severity of CFS.
'All the goals she has had all her life have been taken away from her,' Mrs Wilson-Glab said. 'Her teenage years have been taken away from her.'
She said they remained positive and the family encouraged Alex to achieve everything she wanted in life."
Alex wants to raise awareness about CFS, which was once known as the 'yuppie flu', saying it is a recognised medical condition and not a psychological disorder.
Alex, who sometimes needs a wheelchair, said one person had died from CFS in Australia and she fears she will be next. 'I don't think I will ever recover completely. It would be better to die because people would listen,' she said.
Aspiring lawyer Alex is doing one VCE subject at Lowther Hall but is so sick she can't attend school.
She will be admitted to the Royal Children's Hospital on Monday for monitoring.
Her mother Jeannie, 56, said the VCAA was refusing to give Alex extra time for her VCE exams. She was furious the medical world didn't recognise the severity of CFS.
'All the goals she has had all her life have been taken away from her,' Mrs Wilson-Glab said. 'Her teenage years have been taken away from her.'
She said they remained positive and the family encouraged Alex to achieve everything she wanted in life."
Tuesday, August 04, 2009
Teenager took his life after suffering years of ill health with ME/CFS
Teenager took his life after suffering years of ill health - Eastbourne Today
Contains: A teenager took his own life after struggling to come to terms
with having ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Guy
Ramsey was diagnosed with the condition when he was 12 and as a result had
to take time off school and was often in pain ... A statement read out on
behalf of Guy's mother, Alison Ramsey, who attended the inquest, explained
that he would often become withdrawn and irritable ... "I said how much I
loved him and how proud I was of him but he said he was fed up and wanted to
get better." ... Assistant deputy coroner Kate Palmer recorded a verdict of
suicide.
Just too sad, a truly depressing condition with very little help, support or even treatment available for patients with ME/CFS
Contains: A teenager took his own life after struggling to come to terms
with having ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Guy
Ramsey was diagnosed with the condition when he was 12 and as a result had
to take time off school and was often in pain ... A statement read out on
behalf of Guy's mother, Alison Ramsey, who attended the inquest, explained
that he would often become withdrawn and irritable ... "I said how much I
loved him and how proud I was of him but he said he was fed up and wanted to
get better." ... Assistant deputy coroner Kate Palmer recorded a verdict of
suicide.
Just too sad, a truly depressing condition with very little help, support or even treatment available for patients with ME/CFS
Tuesday, July 07, 2009
Picasa Web Albums - Danescrest, Brompton, Northallerton - Danescrest, Brompton, Northallerton
"Behind Danescrest, Brompton, Northallerton looking left at the well tended garden area"
Picasa Web Albums - Danescrest, Brompton, Northallerton - Danescrest, Brompton, Northallerton
"Behind Danescrest, Brompton, Northallerton looking right at the eyesore area"
Picasa Web Albums - Danescrest, Brompton, Northallerton - Danescrest, Brompton, Northallerton
What is M.E.? - M.E. is a neurological disease and stands for Myalgic Encephalomyelitis.
What is M.E.? - M.E. is a neurological disease and stands for Myalgic Encephalomyelitis.: "These Xenon SPECT scans show pathological brain changes in a 37 year-old female M.E. patient. They show abnormally decreased brain perfusion (blood flow) which decreases further after exercise.
In contrast, a healthy person’s brain would normally show an increase in brain perfusion (blood flow) after exercise. Dr. Byron Hyde from the Nightingale Research Foundation, Canada, believes that every M.E. patient has some kind of abnormal SPECT scan. (Reference page 7, The Nightingale, Myalgic Encephalomyelitis M.E. Definition, 2007 :-
www.nightingale.ca)"
In contrast, a healthy person’s brain would normally show an increase in brain perfusion (blood flow) after exercise. Dr. Byron Hyde from the Nightingale Research Foundation, Canada, believes that every M.E. patient has some kind of abnormal SPECT scan. (Reference page 7, The Nightingale, Myalgic Encephalomyelitis M.E. Definition, 2007 :-
www.nightingale.ca)"
What is M.E.? - M.E. is a neurological disease and stands for Myalgic Encephalomyelitis.
What is M.E.? - M.E. is a neurological disease and stands for Myalgic Encephalomyelitis.: "M.E. is a neurological disease(1) and stands for Myalgic Encephalomyelitis.
My = muscle
Algic = pain
Encephalo = brain
Mye = spinal chord
Itis = inflammation
It is an injury to the Central Nervous System(2). usually triggered by an infectious disease process, e.g. a virus, or by chemicals over stimulating the immune system(3). It is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems(4).
Prognosis is variable depending on how much and which part of the brain has been damaged(5). Complete pre-illness recovery is rare but possible (around 6% of cases.)(6) Some improvement, even marked improvement (different from full remission) is more likely than complete recovery, although relapses can occur several years after remission(7). Most cases stabilise at varying degrees of disability(8). Around 30% of cases are progressive and degenerative and degeneration of end organs may result in death(9). (One quote of early death rate in M.E. is 10%.This figure includes suicides(10). Early death from cardiac pathology is put at 2%(11). Pancreatic failure can also contribute to early death(12).)
Symptoms can be multiple and vary from person to person but common symptoms include post-exertional malaise, cognitive problems (such as short-term memory loss and concentration difficulties), muscle and nerve pain, muscle weakness, noise and light sensitivity, sleep and temperature disturbance, orthostatic intolerance (inability to sustain upright activity e.g. standing, sitting or walking) and sensitivity to food, alcohol, chemicals and medicines."
My = muscle
Algic = pain
Encephalo = brain
Mye = spinal chord
Itis = inflammation
It is an injury to the Central Nervous System(2). usually triggered by an infectious disease process, e.g. a virus, or by chemicals over stimulating the immune system(3). It is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems(4).
Prognosis is variable depending on how much and which part of the brain has been damaged(5). Complete pre-illness recovery is rare but possible (around 6% of cases.)(6) Some improvement, even marked improvement (different from full remission) is more likely than complete recovery, although relapses can occur several years after remission(7). Most cases stabilise at varying degrees of disability(8). Around 30% of cases are progressive and degenerative and degeneration of end organs may result in death(9). (One quote of early death rate in M.E. is 10%.This figure includes suicides(10). Early death from cardiac pathology is put at 2%(11). Pancreatic failure can also contribute to early death(12).)
Symptoms can be multiple and vary from person to person but common symptoms include post-exertional malaise, cognitive problems (such as short-term memory loss and concentration difficulties), muscle and nerve pain, muscle weakness, noise and light sensitivity, sleep and temperature disturbance, orthostatic intolerance (inability to sustain upright activity e.g. standing, sitting or walking) and sensitivity to food, alcohol, chemicals and medicines."
Sunday, July 05, 2009
Dr. Logan on H2S, Fiber and the Gut | Bringing the Heat: An ME/CFS Blog
Dr. Logan on H2S, Fiber and the Gut | Bringing the Heat: An ME/CFS Blog: "common remedy for bacterial overgrowth in the gastrointestinal system involves antibiotics. Yet antibiotics, paradoxically, are sometimes blamed for setting the stage for bacterial overgrowth in the first place. Many people are not surprisingly skeptical about taking antibiotics because of this. How do you go about ensuring that you’re not just making the problem worse?
Indeed, there have been studies showing that antibiotics have reduced small intestinal bacterial overgrowth (SIBO) and improves a variety of symptoms (including brain-related symptoms) in CFS and fibromyalgia. Yet, these are very small studies of small duration. What happens when the antibiotics are stopped and the patients are followed in the long term? We do not know. Given that antibiotics and overuse of acid-blocking medications set the stage for SIBO, I would be inclined to worry about using antibiotics as a means of clearing SIBO. I would be more inclined to use probiotics and enteric-coated peppermint oil.
There are quite a few different kinds of probiotics on the market that feature different kinds of bacteria. Are there certain kinds of bacteria that may be more helpful for the kinds of gastrointestinal issues that chronic fatigue syndrome (ME/CFS) patients face?
Yes, the benefits appear to be strain-specific. If it is for symptoms that resemble that of irritable bowel syndrome (IBS) then I would suggest 2 strains of bacteria that have been shown to be helpful for gut-related symptoms – Align (Bifidobacteria infantis 35624) and LactoFlamX (Lactobacillus plantarum 299V). In our University of Toronto study, we used a probiotic made by the Japanese company Yakult. The strain, Lactobacillus casei Shirota had been found previously to improve mental outlook in healthy volunteers who had th"
Indeed, there have been studies showing that antibiotics have reduced small intestinal bacterial overgrowth (SIBO) and improves a variety of symptoms (including brain-related symptoms) in CFS and fibromyalgia. Yet, these are very small studies of small duration. What happens when the antibiotics are stopped and the patients are followed in the long term? We do not know. Given that antibiotics and overuse of acid-blocking medications set the stage for SIBO, I would be inclined to worry about using antibiotics as a means of clearing SIBO. I would be more inclined to use probiotics and enteric-coated peppermint oil.
There are quite a few different kinds of probiotics on the market that feature different kinds of bacteria. Are there certain kinds of bacteria that may be more helpful for the kinds of gastrointestinal issues that chronic fatigue syndrome (ME/CFS) patients face?
Yes, the benefits appear to be strain-specific. If it is for symptoms that resemble that of irritable bowel syndrome (IBS) then I would suggest 2 strains of bacteria that have been shown to be helpful for gut-related symptoms – Align (Bifidobacteria infantis 35624) and LactoFlamX (Lactobacillus plantarum 299V). In our University of Toronto study, we used a probiotic made by the Japanese company Yakult. The strain, Lactobacillus casei Shirota had been found previously to improve mental outlook in healthy volunteers who had th"
Dr. Logan on H2S, Fiber and the Gut | Bringing the Heat: An ME/CFS Blog
Dr. Logan on H2S, Fiber and the Gut | Bringing the Heat: An ME/CFS Blog
Explains so many of my symptoms & experiences over the past 35 years. . .
Explains so many of my symptoms & experiences over the past 35 years. . .
Subscribe to:
Posts (Atom)